Anniej, I think the predict tool is good for measuring population within medical constraints but the variables outside of those medical constraints are too many to measure and too much data for the medical profession to collect and monitor. Glad you are doing well statistically or non-statistically speaking! You do make me laugh at times and that is good medicine! X
I'll look up the Jonny Bowden book. Thanks for sharing MJK.
I looked up the book and found two others of his which looked good too: the most effective natural cures, and, the most effective way to live longer. (I think their marketing dept know how to get those titles grabbing attention!)
You may also be interested in this article which I found only a few days ago:
Ladies, not going near the predict tool! My consultant at diagnosis was very matter of fact. My cancer was bog standard, my treatment was bog standard, and I'll be on Letrozole for five years then reviewed , and then he'll see me in another five. That'll do me. I'll be 80 by then. 😂
As for the nutrition, I picked up a super link on the forum re foods good / not good for aromatise inhibitors. I've tagged it on my favourites and at the moment this is my bible. The property of each food is highlighted and relates to particular breast cancers. I'm sure lady bowler or one if the other CC will re post. Down one stone and loving it! X
I just had a look at that book on Amazon, it looks an interesting read, I will have to order it.
Raitchr, I'm with you there on the healthy me front. Whilst I am pretty much ideal weight for height and have been pescetarian since age 14, I was a regular moderate drinker (within recommended guidelines) and have had considerable stress over the last 8 years with divorce, taking on a mortgage again, a stressful job in the economic downturn (thankfully moved on from there into public sector), a couple of friends dying and me being in three car crashes (none of them my fault). I'm learning to transform my life by letting go of control and allowing others to help more and staying emotionally neutral (in a mindfulness/Buddhism kind of way). I've quit alcohol and have quit dairy products and am pretty much now non-dairy pescetarian. I eat whole grain foods all of the time and natural sugars and more alkaline fruit and veg. I intend to no longer treat my body like a skip so won't be indulging in regular bad treats in future. Let us know if your dietician comes up with anything we aren't already reading! I agree that it is confusing and even the experts seem to get challenged on a regular basis so it's hard to know what to believe! The main thing is to make sure you don't compromise anything like calcium during the quest as this is important to prevent osteoporosis.
I haven't used the Predict website or anything, my Consultant said 4.8% chance of recurrance based on diagnosis, surgery and path results. I find stats confusing and alarming they vary so much. I guess the best person to ask is Breast consultant or Oncologist.
I too have changed lifestyle and diet. I am compiling a list of what I should and shouldn't eat and looking at foods which can prevent cancer cell division. It is confusing what to eat so I am going to ask my Onco to refer me to the dietician for best advise going forward. I also know I need to loose weight, lost 1/2 stone from diagnosis to start of chemo but know my "ideal" weight should be a stone less.
MJK, Like you, I wish my stats could be better, however, those stats don't go into anything like lifestyle as a category so I'm going to focus on staying heathy and staying positive and fight with sheer determination to give me the best chance of staying in the positive percent. The will to live is a powerful thing so don't let those stats get to you. I know it's hard to be positive and strong all of the time - I aim to be either "up" or "getting back up" and that's as much as I expect from myself. Xx
Treehouse, my cancer was triple negative so as its aggressive chemo is always given.
My Mum also had BC 3 years ago. She had ductal in situ in one boob and lobular in situ in other. She had Bi Mx, clear nodes and didn't need chemo or rads. Hers was result of being on HRT for over 25 years according to the Consultant, she requested gene testing but they said due to her age and get it wasn't necessary.
I have found out about a study for gene testing which is still open to women to join. It is run by the Institute of Cancer Research in Surrey. The study is called BOCS looking at breast and ovarian cancers. I have sent the info to my Genetics Counsellor to see if she will send my blood.
Hi ladies, must all be at that stage. Woke up in the early hours with a hair ball in my mouth! What's all that about? Checking eye lashes and nose hairs now. I don't know wether to go for the big shave or try to hang on. I said from the beginning I wasn't bothered about losing my hair, so how strange that I now am. Perhaps it's the final insult? So, Raitchr, loving your comment. I'm not going to get bitter about it all, I'm going to get better and this is part of it, unfortunately. Going out to an art gallery today and enjoying feeling really well before session 2 next Friday. Good luck to everyone going in to chemo this week, and recovering. Stay strong. X
Hi Wandestrong, I too didn't want chemo, I feared it more than surgery. I didn't want to do something that would make me look and feel like death when that is what I am trying to avoid! My BC surgeon said chances of recurrance is 4.8%
I have only had one cycle of FEC and apart for 2 days when I felt rough and totally constipated it has been ok so far. Next time I know to rest a lot more and not be a super hero. I have agreed with my husband that the maximum I will do is get up, get the boys ready for school, wash the uniforms and shower in first week of chemo. Everything else can wait until the SE have worn off.
People say to me that I look well and am so brave. How do they expect me to look? I rested when I was rough, I eat well and have no stress in my life now I am not at work. As for being brave, we have no choice other than to be brave, that's what being diagnosed with cancer does to you. You either have to be bitter or get better.
My next FEC isn't until 1st June as Bank holiday Monday got in the way so looking forward to the next 12 days of feeling awesome before the next poisoning!
Best wishes everyone
Wandestrong, it's a good decision. Chemo is tough but not the end of the world, it's just a big commitment in terms of obsessing over your health. My steroids are keeping me awake, hence why I replying so quickly! X
We recently got Netflix too (is this a chemo stereotype emerging?) and I've created a craft room which I'm really pleased with so I can embroider, draw, make cards, bracelets, read and burn some aromatherapy oils.
I have a Chrome cast on my bedroom tv so I can watch loads of catch up tv without having to lift more than my tablet and press connect, best invention ever for me!
Thanks Treehouse, I think we all needed that reassurance. Must say I had a bit of a wobble when my Onco described it as tough! I will watch out for your posts. X
The Docetaxol (aka, Taxol) sounds like you really wish you could have a gin and tonic or two and you can't even do that. Now have to drink camomile tea and light aromatherapy candles for escapism! Wow, we're just out of hand rebels with the herbal tea! We'll get through it, we just have to get in the know with managing side effects!
Mai7, I haven't looked yet. I know it won't be pleasant but in the scheme of things it is possibly at least 1 really bad week, as in aches and pains and can't get out of bed, per 3 weeks for 9 weeks. Two of my T's Wil be in the school summer hols so not great but my husband will be at home so should be ok. I think we are all ready different to how side effects get us and hopefully there will be some meds that we can take to help.
Gillyb, thanks for sharing the nhs predict tool. I just ran my details though it: age 48, ER+/her2- grade 2, 50mm, 4 local nodes and my best survival rates came out as 5yrs 87%, 10yrs 69% if I have adjuvant chemo, hormone therapy and trastuzmab. Now I'm already having neoadjuvant chemo so will this mean more chemo post surgery? Yikes! I just looked up Trastuzmab and it is also known as Herceptin which is used to treat Her2+ so don't know why it's recommending it for my diagnosis?
Raitchr, have you checked out the thread for Docetaxel in "going through treatment>chemotherapy>Docetaxel" - it doesn't look a fun place to be!
Hi there my heart goes out to you especially as you were pregnant and having an op for Bc! I have just had a lumpectomy no nodes involved and my onco score has returned at 30! SEEMS THE ONCO IS RECOMMENDING CHEMO and I have been researching this all day.
HAS ANYONE USED THE SITE CALLED PREDICT ...IT GIVES SURVIVAL RATES DEPENDING ON THE DETAILS U PUT IN...IT'S AN NHS SITE.
AnnieA I am 3 x FEC and 3 x T, the T one is the hardest as in it knocks you off your feet for about 5 days from what I can work out on other threads. I am sure there are daily injections for 5 days. It makes your bones hurt. I have read that the taking hay fever tablets with Loratadine helps to ease the pain, along with paracetamol and hot water bottles. I have been following the March and April chemo starters to stay ahead with info.
Hey treehouse he did amazing, I cried a bit when he first cut a chunck out my hair then I was fine, the verve lucky man was playing on the telly just before we started and I kept making him rewind it back and played it on loop throughout as it made me feel happy. It took about an hour to complete, My husband choked up twice throughout and said it was the hardest thing he had to do but he said I look hot with no hair. He then preceding to find me pics of lots of women with their head shaved. I have a twin sister and my mum who are waiting to come see me from work and I know they must be nervous as to how they will react when they see me for the first time with no hair. I think it is really hard on our families to watch us go through this as they feel so helpless.
Hi Annie A, I am on the same as you. I had clinic yesterday and my consultant actually used the word 'tough'. I am trying not to stress about it at the moment, and am just determined to get through the first three EC's. I am seeing him again in six weeks when he will assess the situation again. He has assured me that any treatment will be appropriate and if I am unable to tolerate it then it stops. I told him I wanted drugs big time re T, I'm not into pain, and he said he wasn't either! Don't know if this helps, Annie, but everyone is different and I suppose until it happens we won't know. 😱 X
Wandestrong so sorry you are going through this and at 34 weeks pregnant when you had lumpectomy.
it is a week today since I had first chemo and I feel back to my old self me and my husband shaved my hair off today, I had long blonde hair before and I was dreading losing my hair but i have to say the relief after shaving my head is amazing and I just feel like it was always there in my head waiting to happen. I have found I get very tired easily and I keep feeling like my blood sugars are low but feel fine again once I have eaten.
7 more to go. 3 fec and 4 tax
Treehouse, I was very lossy yesterday but not noticeable yet except for a small thin patch on top. The nurse warned me yesterday that I would lose my hair in approx 48 hours after my 2nd FEC and no cold cap. I slep in my soft bamboo beanie cap last night as I didn't want to wake up with my face buried in a hairy pillow. I've shed less hair today than yesterday so anything could happen over the weekend! How many treatments have you had? Did you cold cap?
Hello again Wandestrong, good to hear that you and baby are doing well after such a challenging time. I've coped with the FEC really well and have continued to work full-time from home, thereby avoiding exposure to germs. It's lovely that you have good support from your Mum too as she can share your pain in a way no one else can. I don't know if you've read full history on this thread but there are many tips to find and you can have fun reading our story's so far. Important thing: aim to drink 2litres of water the day before, on the day and the day after treatment to help with side effects and flush your bladder through to avoid irritation. Put some cranberry juice in your water too to assist this process. My strategy is to eat healthy little and often and avoid fizzy drinks in the first few days to reduce risk of dehydration. I've gone 100% teetotal. Take care. X
Hi AnnieA , I'm on 4 rounds of FEC followed by 4 rounds of T so the same cocktail as yours but you don't have the F part of the FEC, just the EC, if that makes sense. I'm coping really well with the FEC Combo but dreading the T part! 😕
Treehouse, are you on T now? You could try taking Loratadine antihistamine which is recommended for bone pain but check with your Oncologist first. My Oncologist was happy for me to take it for eczma and allergies.
wow, I've edited this thread about 3 times as I'm getting people mixed up! ......and I thought my brain function was good before! Maybe a distorted perception of my abilities (apologies in advance for any incoherent babble!)