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Living with SBC

72 REPLIES 72
SamanthaL
Member

Re: Living with SBC

I have to say just how honoured I am to meet you all. A fine inspiration to keep on going, whilst making what we have truly worthwhile. Having announced that the liver biopsy didn't go too well, I can now confirm, that it didn't go to plan. - caused the liver the bleed q a bit, and I have a bit of a clot - which I am trying to manage.  The pain is considerable. 

Sadly this means that the results, well they got just liver, so no idea on the cancer, and they are reticent to operate on it again. 

But hey, scans are good, and the chemo will shrink things.

 

i went to work yesterday, and for six hours - I wasn't a cancer patient - felt great! 

tomboy81
Member

Re: Living with SBC

Forgot to mention, my gallbladder was also removed during the keyhole liver op too. The PET scan which revealed the liver met showed I had gallstones too. How embarrassing.... 😊
tomboy81
Member

Re: Living with SBC

Hi chick! My solitary liver met (2.5cm) popped up after being on tamoxifen which did absolutely nothing for me! Prior to this I had 3 "low volume" bone mets in my spine. I'm ER+ (8/8) PR+ (3/8) and HER2- Initially I was offered radio frequency ablation (RFA) but due to the position of the met, the specialist was reluctant due to possible damage to other organs, no clear margins etc. After I was told RFA wasn't an option I was sure I'd be put onto oral chemo (cape) However, I think due to the fact I'm very young and my onc doesn't want to "burn through drugs too quickly" I was offered surgery. I was referred to a different hospital for the actual op (I'm based in North London) During my pre op consultation the surgeon said he'd try to to it by keyhole but things might change whilst I was in theatre! It was a pleasant suprise when I woke up that he'd managed to do it by keyhole! I now continue to be on zoladex and anastrazole post op. My medical team are wonderful and I've never had to push for anything. Even after my stage 4 diagnosis I was allowed to continue with my mastectomy and reconstruction as well as being offered ovary removal too. I think the fact I'm young and completely asymptotic from cancer has gone very much in my favour! I hope that helps. Tomboy X
Chick
Member

Re: Living with SBC

Good Morning Tomboy81. Hope you are resting up after your Liver Resection. This is something I am very interested in. A scan in June showed my tumour in the liver to be 14mm. With my recent scan results it has reduced in size to 11mm due to the chemotherapy with three further to be applied to this. They can see what they believe to be two cysts that have not changed also and are of no concern. I was wondering what your diganosis was as my secondary is to the lymph nodes which have also reduced in size, base of the spine which is now only showing scarring from cancerous cells and the liver which is of more concern but showing reduction. As your tumour sounds like it was isolated was this something you had to push and request for or was your keyhole surgery suggested by your Oncologist please? Chick x

SamanthaL
Member

Re: Living with SBC

Tomboy81, rest up - I know liver operations are challenging. 

rosie53
Member

Re: Living with SBC

Hi Tomboy81, good to hear from you, glad your doing ok and and your op went well, hope you have a speedy recovery.

Take care hugs Janette xxxx 

tomboy81
Member

Re: Living with SBC

Hello to all of you lovely ladies. Just checking in for roll call! To keep you updated on my progress, I'm now home after a liver resection to remove a 2.5cm solitary liver met. Surgery performed via keyhole. I was in hospital for 4 days. As is the way with this forum, I'm happy to answer any questions/share my experience if anyone is interested. Personally, the wealth of knowledge on here has been a lifeline for me! Big cyber hugs to all of my SBC family xxx
Chick
Member

Re: Living with SBC

Hello Ladies. I hope we are all doing well. Cannot believe it has been a month since I was last on but I have some good news. I received my first scan results last week. The tumours in the lymph nodes have reduced, the active cells on the base of my spine only show as scarring now where it is healing and the Liver, being the major concern, shows a reduction of the tumour from 11mm to 8mm after three Docetaxel treatments. Fingers crossed it reduces more as chemo no 4 on Friday so I am waiting for the side effects to hit tomorrow. They have located another two shadows on the liver but they are saying these are not of a cancerous concern and could be cysts so I am hoping the next few rounds attack this too.

Hope you all enjoy your Sunday and keep strong xxx

EJ81
Member

Re: Living with SBC

Hi Samantha,
Sorry you had such a rough time with your biopsy. I was 'lucky' enough to have mine the day after my MX so I was still totally dosed up on pain killers. When they gave me whatever the 'relaxer' is they offer I fell asleep and they had to wake me!!!
I just wanted to reiterate that you should really look into PIP. MacMillan can help or you can ring the DWP and do most of it over the phone. You need a gp or your onc to fill in a ds1500. There is a PIP thread on here that is worth a read tgrough. I got it and it has really taken the pressure off as far as work is concerned. Xxx
rosie53
Member

Re: Living with SBC

Hi Samantha, Julia is right, those words be "be kind to yourself" are very true and important!! I use to be such a stress head and would worry about anything and everything but since my mets dx last year my outlook on life has totally changed. You and your family are what matters now you have to learn to put yourself first and try not to worry about things so much. We have enough worry and stress living with this horrible disease!!

Do you know about PIP and ESA that you can apply for??

Take care hugs Janette xxxx 

Cress
Member

Re: Living with SBC

Hello Samantha,

 

The liver biopsy sounds fairly hideous. I've not had one, as I was told that they could tell from the CT that it was bc lesions. Try not to stress too much about work. I just went back on Tuesday after 6 months off and I know that I'm lucky that I've racked up 14 years with my employer, so they didn't give me any trouble. My workplace was still there and nothing had emploded! When you're hit with SBC, you need to put things in perspective and put yourself first - it's not selfishness. Your colleagues and even your family don't know what you're going through - they can't.

 

Many women on the forum use the phrase 'be kind to yourself'... I now know exactly what they mean.

 

Best wishes,

 

Julia 

nicky08
Community Champion

Re: Living with SBC

Hi Julia/cress

A very quick reply as I don't have constant wifi at the moment having moved house last week. Hope to have it soon!

i did request a liver biopsy, it wasn't offered and I would say isn't offered routinely. At the time I still 'showed' as being ER, PR positive and HER negative so my onc wasn't expecting any real changes. He was quite surprised that I was now. HER positive as well. My BC hasn't changed its nature as such so although I now have the more aggressive form it still seems to be slow growing as it was from my primary. However it does mean I now have two HER treatments thrown into the mix, Herceptin and Pertuzamab. As to RFA I haven't been offered that although I asked at the beginning but I think with3-4 small mets it wasn't so easy to treat with RFA. So far the chemo I have been on Capecitabine and two years later docetaxel have kept things at bay and shrunk the mets considerably since my liver mets dx. I have in the past felt liver pain where my liver feels very uncomfortable and this hs got worse at times with some of the heart meds I had to take a few years back as they can be liver toxic, or so I found out! Post on the liver mets thread/s for more answers about other treatments, some ladies may have had them as well.

samantha, so sorry the biopsy was so bad. I must admit it wasn't the nicest thing to have had done and if the local anaesthetic doesn't quite numb the right part of the liver it is soooo painful, but I don't like to say that too much on here as everyone is different and may not have that happen.

Nicky x

 

SamanthaL
Member

Re: Living with SBC

Had the liver biopsy yesterday and my goodness the pain. Really felt ashamed as I howled like a banshee, and just to add to it all, I now appear to be intolerant to the opiate pain killers - so vomited my way through most of the bed rest. Good grief.

PET tomorrow and port fitted next week ready to find the full extent of the cancer. 

Quite frankly terrified.

ghastly too is that my partner's business is now going down the pan. And my own workload isn't exactly lovely.

 

holding on to the comfort blanket that this group can offer.  

Cress
Member

Re: Living with SBC

Hi Nicky,

 

Just wondering... were you offered a liver biopsy, or did you have to request one? I'm always mystified that some people have RFA and some surgery for smaller mets but others aren't offered anything other than the systemic drugs. I'm having a CT tomorrow and will be interested to find out if there's been any liver spread. The last scan showed my original 2cm met plus a new small 10mm one.

 

Glad to hear that you are feeling better than you did over two years ago. I keep wondering what liver met symptoms are supposed to feel like, as I don't think that I've had any real problems from them yet.

 

 

I would be grateful for any advice on how to steer the treatment discussion towards someting other than drugs.

 

Regards,

 

Julia 

nicky08
Community Champion

Re: Living with SBC

Hi samantha

sorry you have to join us on the secondaries section of the forum. You will get lots of support and advice based on our own experiences. There are a few liver mets threads you may want to check out but you may have to search a few pages down as it's all getting very messy at the moment!

just to say that I had a liver biopsy 2 years ago and glad I did as it showed that my receptor status had changed and therefore so was my treatment plan. The biopsy can be uncomfortable rather than psinful but you will need to rest as there is a risk of a bleed which can happen due to the high level of blood vessels in the liver, I would suggest you don't go to your meeting but rest afterwards as I'm sure your team will say. You could also be in some pain but paracetamol or ibuprofen should be enough to help. If you are feeling out of sorts it is possible it's the liver mets are causing it depending how many you have. I must admit I feel sooooo much better now than I did 2 and a half years ago when I found out my bone mets had now spread to my liver.

Good luck and I will look out for any reply or questions you may have but I nay be out of wifi area fir a while as I'm moving house!

Nicky x

SamanthaL
Member

Re: Living with SBC

Hello every body, just been diagnosed and joining this useful lovely helpful thread.

Can someone please point me to the guidance on liver biopsies? I have mine on Monday, and a I think I just read I have to lie flat afterŵards.

Can I ask a stupid question? Could I go to work afterwards, just I have booked a meeting and really can't stand  postponing it. 

I've  spent the last few days freakinqg out and I kinda want to pretend I that things are back to 'normal' or rather like - pretend it's not happening. 

Also I am feeling pretty unwell at the moment, tired and exhausted? Could this be a result of the lesion? 

Chick
Member

Re: Living with SBC

Morning Ladies. Well, I am finally back on air after starting Docetaxel on 24th July. After a four day stay in hospital with Neuropenic Sepsis, then a second dose of chemo, which put me on my back again, we have realised that within two days of treatment my white blood cells just disappear. Antiobiotics sorted me out. Hair went within two weeks but this time round I was eager to get it gone. So I did and I donated it to the Little Princess Trust for a child with cancer. Just dealing now with the side effects but generally on a good week. Sept 4th is my third chemo and I will be scanned to see how my body is responding. Fingers crossed as I am praying the one in the liver disappears but Oncologist has suggested RFA if the chemo is not working. So, hope you are all doing well and keeping chins up. Just wish I would stop craving Apple Pie! xx

rosie53
Member

Re: Living with SBC

Hi Tomboy81, glad things are moving for you, I didn't realise they could cut mets out?? Good luck with it all and let us know how you get on.

Hugs Janette xxxxxxx 

tomboy81
Member

Re: Living with SBC

Hi Janette. Thanks so much for asking about me! After finding out RFA wasn't possible due to the position of my liver met, my wonderful medical team have referred me to a specialist who has agreed to cut the met out by keyhole. Just waiting for surgeon to get back from holiday and op should happen early September. They're also going to analyse the sample to make sure my status hasn't changed. Despite being 8/8 ER+ for my primary, the hormonals aren't working as well as they should be. Just itching to get cracking now!!! Lots of love to all of you amazing ladies. Remember you're fabulous! xxx
rosie53
Member

Re: Living with SBC

Hi Tomboy81, was just wondering how your doing?? Hope all is well, take care. 

Hugs Janette xxxxxxx 

Marie123
Member

Re: Living with SBC

Will be thinking of you and sending oodles of positive vibes. Marie xxxx
rosie53
Member

Re: Living with SBC

Yey Marirose, that's great news bet you feel sooo relieved now, you enjoy a nice cheeky glass of wine or two!!

Guna pop a sleeping tab tonight to help me sleep got that dreaded knotted feeling in my stomach.

Hugs Janette xxxx 

Marirose
Member

Re: Living with SBC

Sorry Janette meant to wish you lots and lots of luck with your results tomorrow I will be thinking of you hugs and love xxxxx

Marirose
Member

Re: Living with SBC

Thankyou Janette and LD I am so relieved I fully expected the treatment had stopped working what I thought was a lump could have been thickening of the tissue it seems to have gone now no extra lump could be found everything was quite stable what a big relieve. So I have had 14 cycles of everolimus so the e/e seems to be working for me.

 

Best Wishes to all who are waiting for results xxx

LemonDrizzle
Member

Re: Living with SBC

Hoping you get your 4th stable news today Marirose x
rosie53
Member

Re: Living with SBC

Good luck with your results today Marirose xxx

belinda
Member

Re: Living with SBC

belinda
Member

Re: Living with SBC

Hi tomboy, I have no experience but do know others have had liver resections with secondaries. One lady who used to post often is Jacksy. May be worth reading some of her posts? Are you at Marsden or Christies? If not is it worth getting a referral? May be wrong but I seem to remember Jacksy was at the Marsden.
Good Luck. X
tomboy81
Member

Re: Living with SBC

Hi all. More drama. Saw RFA specialist on Friday. Seems this treatment isn't an option due to the position of my liver met. I'm being discussed at an MDT meeting on Tuesday and have brought forward my Onc appointment to Thursday. So disappointed. RFA specialist also told me that surgery may not be considered as it's a secondary cancer. So frightened nothing can be done. I've been put back into anastrazole which they're not even sure is working (met has appeared since being on this drug- though bones have shown improvement!?) Has anyone else had intervention for liver mets that didn't include RFA or the dreaded chemo? I want to go to my appointment on Thursday armed with options to push for! Xxx
rosie53
Member

Re: Living with SBC

Thanks Marirose, good luck to you too for Wednesday, I've also had 3 stable this will be my 4th too!!!

Hugs Janette xxxxxxx 

Marirose
Member

Re: Living with SBC

Best wishes for Thursday Janette hope it's good news and you get to book your holiday.xx

My results are on Wednesday had 3 stables hope this one will be 4 x

 

rosie53
Member

Re: Living with SBC

Cheers Marie, I'm hoping for good news because my next port of call will be the traval agents, we have been holding of booking a holiday back to Gran Canaria for September  xxxxxxx 

Marie123
Member

Re: Living with SBC

Good luck for Thursday . Hugs Marie xxx
rosie53
Member

Re: Living with SBC

Hi Tomboy81, well it looks like your onc is on the ball, don't really know much about the treatment you are going to be having but best of luck with it 😉 keep us updated.

I get my 3 monthly CT and TM results on Thursday so getting the twitchy scanxiety feeling!! My mets were also dx last March, so far tamoxifen has kept me stable so fingers crossed it continues.

Hugs Janette xxxxxxx 

belinda
Member

Re: Living with SBC

Hi tomboy, your team sound very on the ball for you, very proactive. Good Luck with the RFA. X
tomboy81
Member

Re: Living with SBC

Hi Janette! Thanks so much for asking about me. Maybe stupidly I started a new thread under "treatments and medical issues" called "liver biopsy mystery" I suppose I was vainly hoping that the PET scan false flagged after a pre-biopsy ultrasound couldn't see anything. Had an MRI last week and today a single liver met (2cm) was confirmed. Apparently the ultrasound didn't show it because it was quite deep (?) The plan is to have radio frequency ablation to burn the met off. Onc is quite relaxed he'll be able to wipe it out. Seeing an RFA specialist tomorrow and having the procedure in the next few weeks. Rather confusingly I've been put back onto anastrazole as bone mets were showing improvement!? Liver met appeared whilst I was on anastrazole. Maybe they think it originated from when I was on tamoxifen earlier this year (which didn't do anything for me!) Obviously gutted but feel better now there is a treatment plan in place and my hospital are acting quickly. I just didn't think I'd have progression so quickly (I was diagnosed with SBC in bones from start in March 2014) 😢
rosie53
Member

Re: Living with SBC

Hi Tomboy81, how are you getting on?? Hope all is well. Have you had your MRI results yet??

Hugs Janette xxxxxxx 

nicky08
Community Champion

Re: Living with SBC

Hi tomboy81.  Although this must have been incredibly frustrating for you it as you still dont have an answers or a treament plan in place it does mean that if you do have liver met/s it/they must be very small if they cant be found! If it does turn out to be liver mets then the smaller they are the quicker they should respond to treatment and possible theres more options for treatment such as the surgery that you mentioned before or even radiotherapy if its an isolated case?  Just hope you gets some proper answers though tomorrow when you have the MRI - push for the results to be given to you as soon as possible,

Nicky x

rosie53
Member

Re: Living with SBC

Oh no Tomboy81 what a nightmare! I bet you got yourself all prepared for it as well, I bet your head is up your backside now wondering what the hell is going on. Well hopefully the MRI tomorrow will clear things up for you.

Hugs Janette xxxx 

tomboy81
Member

Re: Living with SBC

Ugh, more drama! Went for liver biopsy today and got sent home- they couldn't find anything on the ultrasound scan! The Doctor doing the procedure said the liver looked perfectly normal and healthy. The single lesion I'm meant to have didn't show itself. Booked in for yet another scan tomorrow (MRI) Pretty sure something must be there as I'm not lucky enough for it to be a false alarm! Honestly, cancer is like having a full time job sometimes! ***goes off muttering obscenities***
springsummer
Member

Re: Living with SBC

Hello Tomboy

 

hve just read your thread. I am so sorry. BUT this is no way the end for you. I was diaganosed 4 years ago with SBC (her- E+)  and am still working full time in a very demanding job - commuting 1hour and 15 minutes each way and live a full life. I have been through bad times -  but feel completely normal at the moment. I  was on Tamoxifen for 3 years - no problem, then cap when it stopped working but cap did not work for me and now they have put me on a trial PARP inhibitor drug which -touch wood is great - not chemo, very few side effects - just a bit thinning of hair and a slight twitch in my left eye. This drug is really good with BRACA patients - those who have the BRACA gene, which you may have as you are so young. Maybe a good idea to check it out as there are lots more treatments availavlel to you .  There is also a new hormone drug that has just finished vbeing trialed that everyone seems very ewxcited about. Anyway tomboy, take care and remember althoug this is sh**t it is doable for a very long time. SS

helen44
Member

Re: Living with SBC

All the best for your biopsy on Tuesday tomboy. I was diagnosed Dec 2012 with sbc, bone mets & then Sep 2014 with liver mets. Originally Her2 negative but a tumour which I had removed from my sternum showed I had changed to Her2 positive so I was started on herceptin & had 1st docetaxol chemo in Nov 2014. 6 cycles later & the liver lesions are insignificant & I continue on herceptin, exemestane & Denosumab. Without that sternum tumour I would not have known that I had changed receptors. Here's hoping that your onc gets you sorted with a treatment plan asap.
Take care, love Helen x
EJ81
Member

Re: Living with SBC

Hi Tomboy, glad they're getting a shift on. There is a discussion of liver biopsies on the more recent liver mets thread if you're interested but I don't think you need to worry. All I'll say is becaware you need to lie flat for 4 hours after so try not to have a full bladder!!! Xxx
rosie53
Member

Re: Living with SBC

Hi Tomboy81, thank you for the update, your hospital/onc are really on the ball arn't they!!

Take care and good luck. 

Hugs Janette xxxxxxx 

tomboy81
Member

Re: Living with SBC

Just a quick update from me. I'm booked in for a liver MRI and biopsy on Tuesday. Thankfully my hospital are super efficient! I'm not too worried about the procedure and my Mum & Dad are coming down to pamper me for a bit. Consultant appointment to receive results is on Thursday 16th July. I'll let you know how I get on. In the meantime, enjoy Wimbledon and Pimms in the cyber cafe! I understand the warm weather has led to a topless waiter policy? This is in the interests of employee wellbeing, of course. We wouldn't want Mr Poldark passing out on us with heatstroke (especially as I'm not sure what you ladies would do to him whilst he was unconscious!) xxx
Marirose
Member

Re: Living with SBC

Hi tomboy sorry you are so down at the moment I agree with Lemon Drizzle infact with all the other ladies. It is hard when treatments don't work especially when they have worked for someone else but they will find one to keep you stable don't loose heart. I loved the one about smashing plates it can be very therapeutic when I was first told I had cancer back in 1996 I wanted to smash milk bottles but we didn't have them anymore so I took it out on some bricks that had concrete on them hence we got some lovely clean bricks. Remember you are never on your own lots of love xxx

LemonDrizzle
Member

Re: Living with SBC

Tomboy, sorry you didn't get the news you wanted today to enable you to make the decisions you need to, but concentrate on the positives - your bone mets are stable and something can be done to sort out the liver. Although hearing the news today is understandably upsetting, your onc sounds as though he is on the ball in checking HER status. A treatment that works for you will be found, so keep positive (easier said than done I know)
LD x
tomboy81
Member

Re: Living with SBC

Thank you so much for your kind words. Although I've never met you ladies, I felt like you were all there holding my hand today.

Ellie- I know what you mean about being a planner! Same goes for me too. I'd just adjusted to the bone mets and was in the process of buying a house, getting married and working abroad. Yet again everything has been thrown into chaos. I'm so fed up...

Belinda/Janette- Feeling extremely sweary today.... Although it's very therapeutic. I just told someone to **** off when they told me to stay positive (luckily they took it in good spirits) I was also just ranting on the phone to my 81 year old Granny. Oops.

Nicky/Mermaid- Weirdly I'm sort of hoping my HER2 status has changed. It would explain why the hormonals aren't working and some ladies on here seem to be getting great results with Herceptin. Other than that, onc says it'll be the Cape next.

Hey, ho. Just another frustrating day in the BC game of snakes and ladders. I just wish there were more ladders. Even my onc can't believe nothing has worked for me yet!
Good luck to everyone else receiving results. Big cyber hugs to all xxx
Mermaid007
Member

Re: Living with SBC

Hi Tomboy,
Good news that bone mets are stable and Onc seems to think he can blast away the liver met. There are more hormonals to try and the biopsy will confirm If HER status has changed like Nicky and if so different meds are available to you. Any progression is devastating but hang in there we are here anytime for you x
nicky08
Community Champion

Re: Living with SBC

Hi tomboy81
Sorry to hear your news but I know what it's like as I had bone mets for 5 years before liver mets were added to the equation. I am also 8/8 for both ER and PR, so I was hormonal treatments, Arimidex plus ovary ablation. Anyway 2 years ago when my liver mets were found I asked for a biopsy and I'm glad I did as having been HER2- for nearly 10 years I had now changed receptor status to HER2+. My hormone status is still 8/8 for ER but now 6/8 for PR. Although I wasn't able to start Herceptin (and Pertuzamab) treatment back in 2013 when the biopsy was done (I had a complicated heart problems caused by FEC chemo) I did start treatment last year and am still on the H and P part as an ongoing therapy. I can't imagine how frustrating this must be for you with lots of life style decisions having to be made so I hope you get some firm answers soon so you can plan around what treatment is planned. Sorry I haven't added to this thread beforehand but I was away on holiday last week and have been fairly busy since my return so have not been on here quite as much as usual.
Nicky x