Can I please have your opinions on treatment for bone and liver mets.
saw my oncologist last week and after 3 months on Faslodex all is stable. Just a quick recap I have numerous bone mets found over 4 years ago which was 16 years after primary. Was stable on Exemestane till Oct last year when a liver met popped up. This is 1.1cm according to CT scan.
I asked about Cyberknife to the liver met. Oncologist sent a letter to QE Bham but was rejected as I already have bone mets. I have now asked about RFA and he said it might be the same answer as before. Because I already have bone mets they won’t do liver. I argued that I’m pretty sure they would if I was a private patient he said the NHS has strict criteria so I’m guessing it’s all down to funding. I know the ladies on the US forum are getting zapped pretty much when they want. He said RFA might be possible BUT as I’m in good health generally and I’m currently stable then leave well alone. I argued that “ isn’t it better to radiate it before the horse bolts and Ive got a 5cm liver met or even multiple liver mets”? He thinks not but has reluctantly agreed to send a letter to a liver specialist at QE Bham.
Girls I’m exhausted with it all, I’m so scared to miss “ a window of opportunity”. My oncologist actually said “ radiating the liver met is not going to extend your life” I argued that with bone mets alone I can carry on for a long time but liver involvement surely shortens the odds. He said the whole body has to be treated systematically when there is more than one location of mets. I argued again that it would reduce the tumour burden on my whole body. We went back and forth but he is sending a letter, I’m not hopeful.
My close friends say I need to take a step back and enjoy my stable period. Maybe they are right as I’m sending myself a bit crazy, slept for 12 hours last night.
What do you think?
One more point about me being scared to “ take my eye off the ball” when Exemestane stopped working my previous oncologist was going to put me on chemo as they didn’t fund Faslodex. Through my own research and sheer determination I found a hospital that funded it and was willing to take me on. So I realise we have to look after ourselves in this nightmare.
Ok that’s me done.
I will really value everything you say or suggest.
I hope you are all really enjoying this lovely very mild weather, my love to you all xxx
Oh Mo you have been through the mill, I’m so very sorry this has happened to you on top of everything else. We were all so worried about you but can now understand why we hadn’t heard anything. Thankfully it sounds as though you are feeling much better now.
Im off to work now but will message on here when I have a bit more time about my chat with my oncologist re RFA etc. Good news on my CT scan that I’m stable after 3 months on Faslodex.
I need to pick yours and Nickys brains about liver mets.
speak later and you rest dear Mo xxx
I’ve just read your post again. Yes, absolutely go for the capecitabine. At first I thought your onc sounds a bit lazy, really, not doing the referral to urology for you and making you do it yourself, but I guess if he had no paperwork he probably thought your GP would have had a letter about your hospital admission so would know what to put on the referral. Really hope you get some answers from them, and hoping the change to Cape is hassle free.
Well done for taking care of your self and building yourself up with walks and good nutrition. I bit of fresh air and getting moving does so much for your mood too, especially now spring is starting to peep through. Hope you’ve got some time planned with your granddaughter in the near future - so precious
Thanks for giving us your update - well what a mill you’ve been through! It sounds awful, and as is so often the case, compounded by delays and teams not communicating with each other. I’m shocked at your onc, it seems ridiculous to offer you no treatment as an option! Especially as nobody has yet established what, if anything, is going on in your kidney. If kidney function tests etc are all clear is it possible you simply have one slightly large kidney? They haven’t informed you what, if anything, they found when they inserted the stent and I wonder if anyone has bothered to compare the size of your kidney with previous scans.
Dear Mo, you must be feeling so rudderless. Is it time to either take your bolshiest friend/relative to an appointment with your onc, and demand a review if all the information, and a clear (preferably written) report of the findings and the plan of action, or else go elsewhere for a second opinion? Now is not the time to be polite and submissive. Easy to say, I know, when it’s someone else. When you’re in the thick of it, you feel so vulnerable and can lose your confidence.
I don’t know what else to say. I can’t see your post now that I’m typing this, so I’m sorry if I’ve got any facts wrong. But know that we all feel frustrated and angry on your behalf. Please keep us informed of what happens next.
Wow mo, that is a difficult ‘story’ to tell and no wonder you had said on the other thread that you were summoning up the energy to write about your experience. I can’t imagine what you have gone through and had to deal with. I think we all, in the back of our minds, know that at some point we will have ‘that conversation’ with our oncologists but not when as far as we know there are more treatment options and we feel as well as we do. A huge shock when you weren’t expecting it.
I do hope you regain the weight you unfortunately lost, it sounds like you need it when you have always weighed in at such a low weight overall. And of course I’m hoping that Cape will work and knock back all those little uggers.
Thank you also for your kind words about my help on here. I try to give back as I have found such great advice and support over the 11 years I’ve been on here, some things that have changed my view on my particular BC as well as knowledge to fight my own cause with my oncologists.
Good luck to you mo, do keep us updated on whatever thread you’re on next and feel freee to PM me if you want - that’s if it works! I’ve not tried it on this new forum format yet!
Hugs to all other liver ladies, how are you all doing?
Well, I have at last summoned up the energy to share some info about my recent experiences. In fact I have felt quite normal again this last week, despite not regaining all my weight yet. My general collapse was due almost entirely to my stay in a local a&e dept........one week. I was discharged on Christmas evening at 6pm.
Firstly I should address Mermaid/Debs..........don't be put off by my experience. If you are offered liver ablation, take it. It can be extremely successful. But it is hard to qualify in the first place. I initially qualified and had 2 tumours removed plus one extra 'spot'. It was done under general anaesthetic, took perhaps an hour, and I stayed in the Churchill overnight. Dr Anderson looked at a ct scan the next morning. There was one more spot to do but that has now been cancelled by my onc because of new progression seen on a PET scan. You have to be 100% stable.
I had the ablation done on 13th Dec 2018 and according to the consultant radiologist who did it it all went fine! He was very happy. I was happy too, because he was. I was sent home the next day, and was doing ok but by day 5 the pain in my right side was excruciating and I was worried about infection. To be fair Dr Anderson did say that the main side effect was pain, but the reality is worrying. I contacted him via a nurse and was told to go to a&e, just in case. My nearest a&e.......Wexham Park Hospital.......is not in my Trust, but the ambulance wouldn't take me to Stoke Mandeville as it would be almost one hour away. This is due to a&e closure locally. I arrived and eventually was given an ultrasound scan which showed the liver ablation was fine, but she noticed that my left kidney was enlarged compared to my right. This caused all the ensuing problems. I was given a bed.........after midnight and all day in a&e.......where I saw a urologist the next day. In fact I saw several urologists, none of whom were sure what to do or why. I realise now that I should have been sent home to recover from the ablation before any decision was made. I had no symptoms…...no UTIs, no pain, no blood in urine…….. which seemed to annoy them! I had come because of the ablation pain. Also my kidney function tests/bloods were fine and always have been. This enlarged kidney had never been raised before.
The decision was made that the kidney was blocked for some reason..........metastatic cancer?.........but they weren't sure what to do. When was my last scan? I had had a CT in August, an mri in september, and another CT 5 days before the ablation, and a CT the day after. They were puzzled. They finally decided to put a stent in my ureter to allow urine to flow. They thought there might be cancer in the surrounding lymph nodes blocking the flow. But booking the op proved impossible for them. Again I feel i should have been sent home with a definite booking in the near future within my own Trust. However they put me on 'nil by mouth' from midnight to 4 pm for 3 consecutive days on the off chance they might be able to do it. This suited their booking arrangments, but meanwhile I was quietly starving, especially as my body was under pressure from the ablation. I was in the ‘flu’ phase. The liver has to work hard to heal.
Ablation..........I was given a booklet which stated that pain could be a problem and to visit a&e if the pain was more than could be controlled by paracetamol. Also it clearly stated that a few days post ablation you can suffer from flu symptoms, with some people suffering 'ablation syndrome'. Certainly by the time I arrived in a&e my temperature was going up and down. This was not noted by the urologists, but was noted by the nurses. Basically I was in the flu phase, but was being starved at the same time, while my liver was trying to repair. I should have been sent home and referred to my urologists in my own Trust. This hospital in a different Trust had ZERO access to anything about my history, or any previous scans etc. And they sent nothing to my onc about my treatment there. But i wasn't feeling well enough to argue. I was going rapidly downhill with so little to eat. In the end they did the op.......another general anaesthetic.........on the afternoon of the 3rd day nil by mouth. I looked fine and recovered well, but eating was becoming difficult, and I wasn't improving. But I could walk around so they assumed I was fine. I now have a stent which causes no trouble but they left it with me to tell my onc and have appropriate scans.
It took me quite a while to recover once home where you have to do everything. My daughter-in-law came to stay after Christmas to support me in my initial recovery………..I was in bed almost all the time……….she was amazing……...despite having to leave little Anna (7) at home in Bournville. Daddy had to pitch in there. I lost 5kgms.
I saw my onc 3 weeks later who wanted a PET scan, and an mri, which eventually showed that I have spots in a few lymph nodes and more in my liver. I think they only showed up in the PET scan. For this reason he won't consider me having the ablation of the last liver spot. Also it means I must change my treatment.
Initially he gave me 3 options.......epirubicin, capecitabine, or.......wait for it.......nothing. With sad eyes in my direction. I'm afraid that the last option being offered was a bit of a shock. i didn't think I had reached that point. I felt I had to justify why I might choose a chemo going forward. I mumbled about my little grandaughter, and wish i hadn't, as it was a bit emotional. I really felt that I had unexpectedly finished all my options so soon. A shock. By this time I had fully recovered and am still asymptomatic. I wouldn't know I had cancer. I had found docetaxel quite hard in 2017......big D.......he pointed this out as if it meant not worth trying another. But nobody finds docetaxel easy, and I had perjeta at the same time which is also hard on big D and some people stop perjeta because of it. In fact for the last 9 months I had no ses with H&P at all. But it didn’t work for me.
My friend who was taking notes suggested I take 3 weeks to regroup.........to regain that 5kgm. 3kgm to go. He agreed. But my onc is always rather depressing, and has hit me hard this time. The suggestion to give up now as an option was hard to take. But I am determined to give cape a go. Why shouldn't it work for me? I want to be gramma for as long as poss. As Nicky has found out with careful research epirubicin is rather obscure given on its own.
My onc left me to arrange an appt with a urologist via my GP. This was a bumpy road…...so hard to pin a GP down, even with an appt……….which she unilaterally cancelled........?..........I had to make a fuss……….but I now can’t understand why my onc didn’t do that. It was done quickly online in the end. I see the urologist at my usual hospital in my own Trust on Monday. Hopefully he will throw some light on what if anything is wrong with my L kidney, and when to have the stent removed. My onc said the kidney doesn’t seem to be working, according to the scans, so the stent can’t be helping. He had no explanation.
I am sorry to rant on. But as I have said my complications arose from the episode in a&e. Perhaps it was as well to discover the otherwise unseen spots on lymph nodes and in my liver. i’ll never know. But my weight loss and becoming poorly was not without reason. I am sure I would have been fine otherwise, recovering from the ablation alone. I was so positive about the ablation……...so lucky to qualify……...but now am rather negative.
But I am feeling much better, going for walks, and eating as much as poss to recover weight. I have always found it hard to put weight on, all my life, but it has never really mattered. I have been extremely fit and well at a steady 7 stone! I am targeting 45 kgms. This morning I was 42.4. Getting there.
All the best with all the brave ladies out there! We have been given a difficult hand, and it never gets easier. I was stable for 13 years from primary, then a stable secondary for 3 and a half years on letrozole. I am 5 years on now and will join the cape ladies soon, whatever my onc thinks! They have a very supportive and informative thread. Nicky, you are a great contributor there too! I respect all your advice. You watch over us all! Our guardian angel! Thank you so much. You should know that we all appreciate it.
Take care everyone, especially debs, Nicky, Jacksy, Linda, Bon, feelthefear, Anne, everyone who comes here. All good wishes were carefully noted and make such a difference. I think we can all feel very alone. I certainly do. Sorry about rambling on, but it does me good to have a rant!!
live just realised you had your liver resection ages ago....I was thinking it was in December, so scrub the irrelevant comments about recovery! Chemo brain today.....
I’m still chuffed about your scan results though 😁
Nicky, that’s great news! I’m so glad for you. Hope you can see small increments of recovery in your activity, energy levels etc but don’t rush it, your body’s been through a lot.
Hi to everyone else and hoping you’re all in a good place today. It’s beautiful sunshine and blue skies here in Hertfordshire so I’m feeling sunny, despite having Kadcyla yesterday.
Soooo happy for you Nicky, really made my day.
great to hear Faslodex working I’m waiting to have my first scan since being on this treatment so it gives me hope it might be working for me too.
Well, eventually the day arrived for me to get my CT results and, hooray, all things are stable. There are no visible mets in the liver and just a small lymph node (elsewhere) that has increased by a millimetre or 2. I had to wait nearly a month for my results as the scan was just before Christmas and my oncology appointment was put back 2 weeks (probably to allow the scan to be fully reported, the actual scan is always uploaded immediately). I was happy to wait, ignorance can be bliss sometimes, but did want to know obviously to know if I'd be changing treatments. Glad to say I'm continuing on fulvesteant and all the post-op recovery has been well worth it as my liver is still NED (even if the crafty little uggers are hiding and too small to be seen yet!)
Good luck with all of you having surgery or other procedures such as RFA. Would love to know how you are all doing.
Thanks for the update and great news that the ablation is now taking place. I know what you mean about delays in getting more scans done to determine what is needed and then running out of time to get a procedure done. I wish you a quick and speedy recovery - at least you are only in overnight and I'm sure won't be in too much discomfort after the procedure.
Holding your hand and sending you strength. Would love an update once it's over and done with.
ps Echoing mo's thoughts and sending Seasons Greetings to all xx
Good luck on Thursday Mo
Your long wait is over which must be good.Take all the support that your friends offer.
Good luck for Thursday, really pleased you are finally getting the RFA. I’m sure all will be fine and please let us know how it went as soon as you are able.