Living with SBC

Hi ladies. Before my diagnosis in March 2014 I was loving life- I had a prestigious job, world travel, a brilliant social life and a great relationship. I had FEC/Taxol chemo with mastectomy and was back at work full time by November 2014. I’m now on denosumab (for bone , zoladex and anastrozole. Since I’ve been on this combo I feel like I’ve become a different person. I’m constantly exhausted, depressed, anxious and angry. Not to mention the hot flushes, night sweats, mood swings and aches and pains! I worked so hard to achieve what I have and now I feel like I just want to run away from it all. My partner is pushing me to continue our old life (i.e “don’t let cancer win”) but I feel like I can’t keep up any more. The pressure is probably increased as I’m waiting for my 6 monthly scan as I type! If this one is stable we’ll be going to America with my job for 3 years (which my partner desperately wants) Plus, we’re in the process of buying a house and have just got engaged! I feel like it’s all too much and I’m only 33! Any advice?? Help!

Hi tomboy81

I have put for you below links to 2 of BCC’s publications you might find helpful.

Take care,

Jo, Moderator

Hi, guess I would advise see how you your scan goes, if the results are good, I hope so, you may feel much more up for the move. But as much as you want your old life back life has changed and it’s not that you are “letting cancer win” you have been thrown physically into the menopause at 33 and taking Anastrozole can make you feel stiff, ache, older. (Was older than you on diagnosis but also pre-menopausal and had Anastrozole.) And living with the uncertainty of this disease is really hard, stressful.
It seems a huge move to go to America, especially with your ongoing health situation but is it worth talking to your Oncologist, GP? Rule nothing out, I have been living with secondaries for twelve years and had years of feeling well. Good Luck with all these decisions. X

Thanks Belinda. You always give such great advice! My oncologist is on board with the America move as my “total volume of cancer is very low” and he believes I can be maintained for “many years” My company are also covering medical costs whilst I’m out there. I had a complete response to chemo and I’m 8/8 for oestrogen positive (HER2 negative) However I feel like an old woman since being on hormone therapy! I keep thinking about a quiet life, back in my native North. I could get an easy job and escape the craziness of London. However my partner is dead against it. I think it would cost me my relationship if I made any drastic decisions (although I feel like my body is crying out for a change of pace!!) Do the side effects get any easier? I’m also scheduled to have my ovaries removed later this year- is a more “natural” menopause any better? I hate feeling like this!

Thanks B. I’ll let you know how I get on. Rest assured I will definitely be staying in touch! Like many ladies, this forum is a lifeline for me and keeps me sane during intense periods of scanxiety (i.e now!) It’s so good to get the opinions of those who understand. Good luck to everyone waiting for results/receiving treatment xxx

Thanks Janette. I just feel so exhausted, achey and depressed right now. I keep crying for no reason and the smallest things tip me over the edge! For instance OH pressurised me into getting our dog back from my parents this weekend. They’ve had him since my treatment last year so he’s quite settled there. My Mum and Dad love doggy to bits, they’re both retired and have a big house and garden for him to run around in. We on the other hand live in a small London flat (where we’re not allowed pets) and work full time. However OH insists doggy should be with us! Result= sad dog, sad parents and extra cleaning, walking, sleep deprivation (the dog barks all night) and guilt for me. Brilliant! Just what I need right now… Hoping my current state is due to meds and scanxiety. Fingers crossed for good results next week which will make me chill out a bit more!

Aargh tomboy. Hope it all works out for you. My advise would be like others have already said . Be kind to yourself and listen to your body. I was in a similar situation with a partner and thought I could keep up with him doing the things we used to do, unfortunately for me , I could not as some days i felt like I could run a marathon , next day I was so tired and needed to rest all day. I had breast cancer 2007 and was clear till 2013 when it came back to my bones and liver. I’m reaching my two years having secondaries and doing fine . I luckily have not so far had to take any pain killers just have denosumab . Look after your self and I hope all goes well with the scan xx

Thanks to everyone for your kind words. There seems to be so much riding on this scan. If I have further progression I’m pretty sure I’ll pull out of the America job offer. I might not even want to proceed with working full time, buying a house and even living in London. All of this will definitely cost me my relationship. I’m petrified. Results are next Thursday. I’ll keep you posted xxx

Bone mets stable but they’ve now found a spot on my liver. Onc is going to do another scan and take a biopsy. This is the second hormonal which hasn’t worked (tamoxifen and anastrozole with zoladex) I’m so angry as I’m 8/8 oestrogen positive and 3/8 progesterone positive- why aren’t the drugs working!? They’ve stopped the anastrozole for now but had my denosumab & zoladex today. Onc says the liver met appears to be isolated so they can cut it out or blast it with radio. Onc is also going to check if my HER2 status has changed (my primary was HER2 negative) I’m so angry and sick of receiving bad news!!! Any kind words for me ladies? Help!

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

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

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

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

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

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

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***

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) ?

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


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

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