I can't thank you enough for all your helpful information. I had no idea that bone mets. can be picked up on a CT scan. do they just scan your torso/ more? Which bones of yours' have mets. 10 years in....I take my hat off to you. You sound incredibly upbeat too which is so very heartening.
I did not know that bone mets. harden. Does that mean they have stopped growing?
What meds. are u on; at the mo'?
Your comment about being relatively asymptomatic is the reason 'my' annual scans rattle me. I might well have to be more proactive. 'We' should not have to fight for medical care.It makes it all more challenging & tiresome!
A lil' about me...as concise as poss. 2015 diagnosed initially with stage 4...totally asymptomatic...so a shock. Lymph nodes and both hips.So I'm 3 years plus in.
Your post was an inspiration to me & I thank u most sincerely......how wonderful to have this forum, to communicate......
Are u enjoying our incessant heat wave??
All good wishes,
OK ladies! I'm never sure when to post good news. It always seems just as you are ready to post something positive that others are having a difficult time. In my journey I've had quite a few really rough patches. I don't know what to think of things going on with me and don't want to get to excited. Last week I went for my scan and then the oncologist appointment to be told I was stable. She then told me I had one lymph node in the collar bone area that had enlarged but it might not be from cancer. She also told me that I had more "opacity" in my lungs but that she thought that my cancer might be dead and that it's dead cells. I'm quite in shock and wonder after 13 years how this might happen and if it could. For the first time ever she decided to do tumor markers. She said in the past they were thought to be very unreliable but that opinion is changing. I called to get the results of these. The nurse called me and told me what they were. The CA15.3 is normal under 30. Mine was 10. The CA27.29 is normal under 38. Mine was 23. I did a little reading on markers and you can get a low false reading of the CA15.3 if you are on afinitor (evermolimus) which I am on. I really wish the oncologist would have called and told me what she is now thinking. I'm curious if she will do tumor markers again when I go back in 4 months. She also didn't say anything about stopping treatment. I've decided for the next 4 months to allow myself to enjoy and think the cancer is DEAD or dormant! I'm not crazy, I know it could rise up again. I will continue with treatments to keep it at bay. I've only told my family and all of you. I'm not ready for others to know of the possibility. Ding dong the witch is dead for now! FF
I had bone mets in 2008, no real symptoms other than a very dull ache when I was out jogging. It was a routine/follow up mammogram that found a local recurrence (of my primary) and a subsequent CT showed up the bone mets. 5 years after that (I'd been on hormone treatment after having chemo for the recurrence and bone mets) I again had an ache, this time in my thigh/hip. I put it down to a change in job where I needed to sit still for several hours whereas I had been more mobile before. An Xray showed nothing unusual so I asked for a CT. This picked up more extensive bone mets (hence the ache) and also liver mets. During the time I had been stable my scans had been pushed out from 3 monthly to 6 monthly and eventually yearly as neither my onc at the time or I felt the need to have them more often. Thats why I'd push for a scan sooner than your onc is saying because if I had had a scan sooner my bone mets wouldnt have been so extensive although I would have expected to have got liver mets at some point. My bone mets (as with everyones) don't heal as such, they just schlerose ie harden, so the damage is done and can't be reversed whereas soft tissue mets such as liver can become NED ie No Evidence of Disease.
My biopsies were only carried out because I asked for them as I had learnt from this forum that BC can change receptor status. Mine did seem to change receptor status but the liver lesion that had been biopsied both times (it was the largest and most accessible) was actually quite a mixed bag as I found out after it was recently removed when I had my liver resection. I always referred to it as my 'rogue' lesion and I was absolutely right, it turned out to be triple negative whereas all my other mets are hormone positive, HER2 negative (as my primary and local recurrence both were). I have been pretty asymptomatic the whole 10 or so years I've been living with SBC so I don't quite get it when the oncologists say that the patient will know! Unless he or I have a crystal ball I can't see how that is the case without a detailed scan. I don't have tumour markers done although I do see the sense in them if your particular markers are affected by what your cancer is doing - not everyone's will.
I have only learnt everything I know about SBC from being on this forum and then using the internet if I have to find out more information, none of this has been passed onto me by my oncologist/s or nurses. In fact the other day one of the nurses asked me about something to do with Eribulin! I have also in the past told my oncologist to read this forum - then they really would know how we feel about scan results, side effects, anxiety, depression, fatigue (the list goes on!!!) rather than just go by what they have learnt or been told. Grrrrrrr, rant over. I have also made sure I know everything I possibly can about my current treatment and what will be my most likely next treatment and have challenged my oncologist or sought a second opinion whenever I have not been sure. We all get only one shot at this life so I'm bl**dy well going to make the most of it and not have some medical professional screw it up for me - don't worry that HAS happened and only by me challenging the decision am I here today.
Bet you're sorry you asked now!!! 😉
Take care, I am happy to answer any questions that I have experience of but of course these are only my views or what has hapened in my treatment so it doesn't mean its the same for everyone else.
Silver, I would get another opinion if you can. Also at least at 6 months you could try complaining about symptoms and maybe that would get you a scan. FF
Many thx for your kind, supportive words.
May I ask a bit of your story.....mets. etc.....when they found the 2nd. lot of mets. were you then asynptomatic?
So sorry you've had to have various biopsies. Is it standard procedure to biopsy all new mets.? I'm beginning to realise that I actually know so very little about this chronic disease.
Its lovely to have found this forum for sharing....
FF, great news that you join back in the Stable Mabel club, I think we have both been members before but at times our membership has lapsed 😉, even better if you have more news to share - all in the goodness of time. I’m with you on the neat freak bit, luckily I stamped out any ambitions that hubby might want to be a hoarder when I married him ha ha, so I just have to cope with some things not being put away rather than moving lots of things that would get on my nerves. Spick and span as Mary Poppins would say 😉 I agree also about the genes. I was tested way back in 2008 but didn’t have the BRCA1 or 2 (which is what they thought would be the case) , but I’m sure there will be other genes discovered that will be recognised as a trend at some point in the future. I agreed for my biopsy samples to be stored on our national database for genetics so future generations may benefit from it, particularly my 2 daughters and their offspring.
FtF, good luck with the biopsy, I’ve had 2 on separate occasions so I know what they’re like. They can be uncomfortable (rather than painful) but I’ve had two different experiences one better than the other but each were fine and no pain afterwards, just the boring bit of lying flat for a few hours whilst they make sure everything is OK. Good that you get your results so quickly as well, I had to wait a while for mine on both occasions.
Silver, that’s awful about the lack of a scan, especially when it is obviously worrying you, I’m sure it is down to funding. If your onc won’t budge on it I can’t think of another way around it, maybe someone else can help on here?
Hi to everyone else, hoping that the slight relief from the heat is helping and that treatments are going well with as few SEs as possible.
I saw my oncologist and told him how unsettling just one scan a year would be to me. He would not budge. I'm actually rather upset about all of this. My Macmillan befriender thinks its a funding issue in my trust. But I have to say this.....it is my life.
My artritis is in full flare so feeling very sore....
Good wishes to all...xx
Thanks f the f. From what I've seen in the past for some tumor markers are right on! Others don't benefit by them. It will take more than one time to see if they are a good indicator for me. I didn't give you girls my whole report. There might be more good news, but I'm not ready to share until there is more to back it up.
I also might be checked genetically again. I was checked 13 years ago and did not have the Brac 1 or 2. My daughter was like Yahoo then I probably won't get this. We had a little chat! Me explaining if you l d have been a false negative and that those genes were just discovered in the 90's and maybe there was more genes that weren't discovered yet. If insurance will pay they are going to do it again.
OK, Need to get moving! I have so many things that need done around here. I get exhausted looking at them. I wish I had the energy to do them! I used to be a neat freak! My lack of energy and hubby the hoarder has rubbed on me. I need hubby to go away for a few days!
Good luck with your biopsy. I really don't know how the liver biopsy is. I did have my lung biopsied through my back and it didn't hurt. Hoping it might be similar for you.
Bon, FtF and Silver,
I am careful with my refined sugar. Not bc of it feeding cancer but bc of my diabetes. My diabetes is under control but it is difficult with "E and E" combo. I try to do healthy carbs, but eat a small portion of dessert if it's calling my name!
I do feel each of our bodies and cancer are very unique. What works to control or eliminate one person's cancer might not work for the next. I also think it's going to be a combo of different things for each person. I'm a firm believer that everything is on the planet for a reason. We shouldn't kill off things. It might hold the answer for something.
By the way, I'm Stable Mable again and they stretched my next scan and Dr appt for 4 months instead of 3! Staying on E and E. I've never had tumor markers. My old oncologist and new one both think they are unreliable. My oncologist said there is now newer thinking on how accurate they are. She is going to use them now. Curious about this. Haven't heard my results on them. Will let you all know when I know.
Thank you for your wisdom and good sense. Your story lifts our hearts. We are all different, we don't know what life's lottery is going to bring us and we can only do what feels right for us. It's good to share but we are all our own person.
love to all Bon xx
Thx ever so for sharing. Your 13 years are tres inspiring to us all....
All good wishes,
Carolyn, Yikes another spider story! Thankful I haven had much interaction with any so far this summer. This weekend son picked up a log to put on a camp fire and dropped it back down. He said OK Mr Spider you can have the log, I'll take a different one. Lol son was cringing at it. Sorry, that spider would have been in the fire.
Hi Ladies, I haven't posted in awhile. I've been reading the conversation on diet. I was drastically over weight and have had mets for almost 13 years. Two years ago I decided to make some life style changes. I was tired of being fat. I also new that they couldn't give me enough of the drugs to equal my weight. I felt if I lost the weight I would have a better chance the dose would match my weight. Over the years I don't know how I got so out of control of me. I did lose a lot of weight back in 2012 and then had a mediation change and put almost all of it back on. I tried a medical diet with prepared food that was 800 calories a day and gained weight. I gave up. Two years ago I realized I was staying the same and not gaining. I decided to try again. I have worked hard and lost 140 lbs. I did not cut out sweets or anything. I do tend to stick to the perimenter of the store. I only go up the isles if I need something.I don't go up the cookie isle. I try not to bring sweet things home and enjoy a sweet at somebody else's house or a restaurant. I also made other life style changes. I made one change a week. If I did good with the change then I would add a new change the next week. I went from being able to do "0" sit ups a day to "50" a day. I drank diet coke all the time. I learned to limit it. I did little changes like you must do 2 house hold chores before you go to work. I really found the discipline in other areas of my life helped. I still want to lose 12 more pounds. I've been holding my own since January,but haven't lost. I'm trying not to beat myself up for this and be proud I'm holding. I'm not exercising bc I broke my back in two places and had it pinned and cemented. I'm afraid to exercise since it broke from hic-ups. I went away this weekend and people were totally amazed at me. The compliments and hugs were wonderful.
I think it was the motivation I needed to tweak my diet and discipline a little more to finish.
I truly don't believe sugar and dairy cause cancer or feed it. My belief is we would all be dead if that's the case. I've known several people who had cancer who tried the no sugar no dairy. They didn' t live long at all. I don't have a problem with who does believe it. I feel it's our lives and we have to do what works for us. I do believe lots of us could eat better to fuel our bodies better. I really feel as long as we get good nourishment we will do better. I believe in moderation and finding a balance that works for your body.
Just want to say. I’m not saying it’s any one thing or even necessarily that we can dictate some of the factors involved, and certainly don’t think we should blame ourselves. I think a lot of research now says it is a metabolic disease, where many factors such as stress, infection, as well as insufficient rest and diet etc all come together and play a part in reducing the efficiency of our immune systems that would usually eliminate the cancer cells everyone has within them every day throughout life. I agree people from every walk get cancer, this only strengthens the metabolic side to me.
I couldn’t agree more about personal opinion and debate, in fact that was the purpose of my post...that all opinions should be equally respected.
Ladies the subject of diet will always bring about a debate as we are all so different In our views and there is nothing wrong with that at all!
My opinion is that I don't believe diet and lifestyle has any bearing on us getting cancer, my reason for this is that every walk of life gets cancer, young ,old ,thin ,fat, fit, unfit, drinkers, teetotallers, smokers, non smokers, vegans, meat eaters and the list goes on!
Also if I believed it was down to something I had eaten, drank, done or not done etc then I would be responsible for doing it to myself and I can't life with that thought!
Please don't feel the need to leave the forum, a lively discussion isn't a bad thing, and we are all entitled to air our views, it's not a personal attack on anyone it's just our individual opinon and we must all do what we feel is right for us. Xx Jo
Hello all, I haven't been posted for a long time , but I do read often.
As to the sugar question I have asked my onc about this (He is actually one of the lead people in research ) he told me to have a dessert if I wanted and have a glass of wine if I felt like it. He has however encouraged me to do The Clever Guts diet. Basically a Mediterranean diet : fish ,fruiit vegetables olive oil you can have chocolate and wine. Following recent research I do eat a lot of peaches .
Rosie please don't leave , you have been a fantastic member of this forum. No one should get told off for their opinion.
Well done to the ladies who have given up sugar , well done to as all for continuing to lead full and active lifes to the best of their abilities. Everyone is different , every cancer is different ,lets all continue to pull together,. Cancer is the bully not forum members .
Love to all
Janette, my comment wasn’t aimed at anyone in particular and definitely not at you. it’s a result of whenever lifestyle or diet is mentioned, and being made to feel how you’re saying you are now on repeated occasions. I honestly can say, hand on heart, it wasn’t directed at you. I was just fed up, especially after Silver had been made to feel bad earlier in the week about posting about statistics, that we cannot be open about our beliefs if they don’t tow the line, so to speak. If you read my post from earlier today you will see freedom to post whatever you believe in is what I firmly believe in. I hope this explains that my post wasn’t aimed at you at all, I honestly respect your choices. Kate x
Wow a can of worms has most definitely been opened here!
ln my post yesterday I was certainly not “scorning” anyone’s opinion, everyone is entitled to their opinions and to live the lifestyle as they see fit to do so. But on giving my opinion i was “scorned” for doing so! I was not condoning anyone’s lifestyle and was not saying that in order to enjoy life you have you need chocolate and wine.
Kate, nobody on here should be sent abusive messages for the things we post that is very wrong BUT I have been made to feel wrong and guilty for enjoying a block of chocolate and a few glasses of wine at the weekend, I weigh just over 8 stone so am certainly not a sugar monster!!
When I was first dx with secondaries four and a half years ago I was frightened to put anything in my mouth for fear of feeding my cancer, but after having a good chat with my oncologist who told me a healthy balanced diet with most things moderation I am no longer on the “guilty train” I enjoy my life and make the most of every day and do not let cancer dictate my every move.
I have been a member on here since dx and have found it a total lifeline especially when first dx, i have always found great support, advice and understanding but I now feel peoples opinions are getting too personal so will now be withdrawing from it.
i wish everyone the best of health, hugs Janette xx
I definitely didn’t take them to heart! If they haven’t the b⚽️lls to say it on here then that’s their problem. I wouldn’t describe them as offensive more judgmental and telling me how to behave 🙄. I’ve received some that I couldn’t even be bothered to open because I really couldn’t care less what they have to say.
The reason I found it easy to give up sugar and makes the changes I have is because I believe in what I’m doing, if I didn’t then I wouldn’t do it, or probably have carried it through, but it totally makes sense to me and that’s what I believe we should all do...what we believe in and makes sense to us, Whatever that is.
I’ve always done my own thing and will continue to do so, even my Oncologist says she respects my attitude and says I always make her laugh, so not taking life too seriously! I don’t wake up thinking about cancer and don’t go to sleep thinking about it either, it’s there but generally I forget about it and get on and enjoy my life. It is what it is! I was simply making the point that you’ve expressed with your opinion on free speech. It’s the old I don’t want to do it, so I don’t want you to do it either attitude.
My comment about Finty was probably because I’ve been thinking about her and would love to know how she’s doing, imo she was a great asset to this forum and I like to think we would’ve been a kindred spirit, though she was far more knowledgeable than me.
Will you be watching the World Cup? Bit annoyed it clashes with the tennis, so the remote will see a lot of action this afternoon, enjoy your day whatever you’re doing!
I would agree with most of what you say, and certainly about grief being a big factor, as I firmly believe it was a major cause of mine but I would say that greatly influences lifestyle factors due to the stress it causes. I think I said it isn’t just about diet, exercise etc.
I did initially cut out all sugar, except for a little fruit, and that included bread, rice, etc but now I do eat non processed sugar in moderation, but that’s because I don’t want it anymore. Sugar is in so many things that I’d say we get more than enough probably without knowing most days. I wouldn’t want cake and chocolate at gigs either, though I would have eaten chocolate at football, but often it’s said about enjoying life, then reference is made to eating chocolate and cake, as if that’s what enjoying life is about, which baffles me.
I didn’t mean to come across saying others weren’t making changes but I also always feel like making the changes I have is scorned upon by some, it certainly raises the ‘here we go again’ attitude. It is a choice but at times, a bit like the statistics issue earlier in the week, I feel not everyone’s choice is respected. In the past I’ve received some quite offensive personal messages telling me what I should and should not post. Finty, who started this thread, left the forum, and I believe one of the main reasons was because of the scorn she received, I know it was a long time ago and members have changed but personally I find that very sad.
Probably expected that while I agree if that’s your choice go ahead, I disagree lifestyle choices make no difference. Not because I believe in faddy diets but because I believe cancer is a metabolic disease, isn’t caused by one thing but by several changes in the body, and that cancer is the result or consequence of those changes. There is a lot of research out there proving processed sugar feeds cancer, that’s how contrast in scans work, but agree it isn’t just down to diet, there are many other lifestyle choices involved. That said I don’t believe it will cure me but I feel so much better for making the changes I have and believe they give me a much better chance to deal with whatever lies ahead. I was a real cake and chocoholic girl but, hand on heart, I don’t miss them now and find chocolate sickly after one small piece. If I was told there had been a mistake and I didn’t have cancer I would continue as I do now because I feel much better for it and I generally ate well, mainly organic, wasn’t overweight, before.
Following a healthy lifestyle doesn’t mean you don’t enjoy life...last week I went to Wimbledon and had a fantastic weekend in London, watching my favourite band, met up with friends from all over the world (in London for the concert) had a great Thai meal, and finished it off with another day at Wimbledon...all without chocolate and cake!!
Thanks for the reply Alexde.
I’ve renovated in a strict conservation area but never listed, very hard work!
Best wishes to you too Feelthefear, hope all goes well for both of you. Kxx
Hi Alexde, very inspiring to read your post. Although not quite as extensive as yours sound, I renovated a house a few months after I started treatment, I was dx straight to stage 4 almost three years ago now. I really think it helped me as I had so many other things to think about and focus on, I had done it a couple of times before so had an idea of what to expect, but enjoyed it even with everything else and would like to do it again now, if I could find the right house! Can I ask you did you make any other lifestyle changes? Hope your renovations go well and without too many surprises, unless they’re good ones! Kxx
Well I am now menopausal and ready to start the main drugs.
I am due to start Letrozol and penu something. has anyone any advice.