Breast Cancer Now Forum

Exactly! Your body, your life! Ask for a face to face. Change your Onco. Change your hospital. It’s your right to have the best treatment .  I know we’ve had people from Yorkshire and Cumbria attend the Freeman in Newcastle. It’s a centre of excellence for Cancer. My thoughts are with you. Good luck. Ann x ... View more

Hi Poppy, where I’m being treated I’ve never heard anyone use the term cancer free! The new terminology appears to be NED ( no evidence of disease) as there is always a chance that cancer will return. In some cases of BC the % can be quite high. If you are happy to wait for him to explain then that’s ok. All sounds a bit fluffy to me though. Sit him down and sort him out next time you speak to him. You aren’t stupid, you’ve been through a lot , and in my opinion a bit of plain speaking wouldn’t be amiss! Ann x ... View more

Hi Poppy, congratulations on getting through all the treatments successfully. A huge journey and a huge effort from yourself. I haven’t experienced the type of bruising you’re talking about but since my diagnosis my mantra is...if in doubt, shout out. Just get checked out by your GP. It could be nothing at all, or related to meds you are taking. Best to be safe though. Good luck. Ann x ... View more

Hi Jo, you’ve got a lot on your plate at the moment so no wonder you’re feeling overwhelmed. I’m ER+ with mets in both lungs. I live in Newcastle and my hospital is a cancer treatment centre of excellence , so very blessed and confident I am receiving excellent treatment. I have never been shy about expressing my needs, so I have accessed many courses on both emotional and physical health at my local Maggies Centre. Macmillan also deliver support. I don’t know if you have thought of reaching out to professionals for help? Your GP would be a starting point. Lots of GP practices have a Marie Curie nurse available. My husband has been very supportive, but he does tend to cotton wool me, so I find attending TaiChi. Swimming , aqua aerobics and dance class at my local gym gives me some space as well as fun. Cancer doesn’t like exercise, so that’s another reason for being active! TaiChi has meditation as well as pain relief, so I just love that. I do appreciate how alone you feel at the moment and hope you can find the courage to reach out and connect to organisations who will help you. Best wishes. Ann x ... View more

Hi Sim, I use two books. One is the Royal Marsden Cook book and the other is the Maggies Cook book. Both are excellent, but the RM contains a wealth of info on the different cancers and combating side effects . The Maggies book is simpler, I found, but being soft back it is now a little battered! Both have great recipes and were excellent during treatments helping in so many ways. I bought mine as a combo on Amazon for £20 but the rrp is that each, so a good buy. On advice from my Onco I stayed away from any books promising healing through diet, or anything extreme. He did advise a varied, Mediterranean style diet, so I’ve upped my grain and vegetable intake. I’m also extremely choosy about protein, now preferring to use organic, outdoor reared, or Atlantic wild, wherever possible .I found, unfortunately, that sugar now exacerbates my night sweats so I’ve cut down on cakes, and that’s a big sacrifice. 😢 . Good luck, and happy cooking 🥰 ... View more

Unfortunately Lou, you are not alone. I suspect you have had numerous viewings of your post with people agreeing with you. I’m four years down the line and still having disturbed nights. Some are better than others, and at the moment I’m managing 7 hours, which is good for me. I’ve tried lots of interventions which have helped me along at different times,   including massage, acupressure. I do a warm bath and lavender oil to help me relax. I only read paperbacks one hour before sleep. I never let myself become over tired as that is the absolute pits! My legs jump about all night. During this lockdown I have found it extremely difficult to get into anything resembling a good sleep pattern, so have turned to my true and tested journaling. I write my anxieties down....which mostly consist of wondering how tomorrow will be, can I manage, what will I be able to do, how fatigued will I be, when will I ever see my family.......you get the picture! This has worked very well, so far. I’ve also recently had help from the Marie Curie SafeFit trial which is about getting healthier. Better nutrition , I think, is helping me sleep longer. By giving me activities to do I now have a routine of exercises to help my lymphodaema and an achievable walk. I think being more in control is the key here, and the realisation that if I can’t do what I want, then that’s ok too. I’m using a Fitbit but relaxation app in bed just before I go to sleep, too. Her voice makes me doze off! Don’t know what she’s saying....don’t care! I’ve rambled on a bit here, Lou, in my effort to help, as without good sleep you can’t function, can you? I think try one or two and move on if they don’t work. Spring and being outside will be good for us all. Best wishes. Ann x ... View more

I was given a leaflet by my clinic with about a  gazillion exercises on it! Instead I took up swimming which helped a lot.....until lockdown. I have recently been accepted on the Marie Curie SafeFit course and have a personal tutor who is working with me on reducing my lymphodaema with a series of 5 gentle exercises. They are actually on the exercise sheets given, but just having to do 5 is so much more manageable. I do 5 head turns left and right, 5 chin drops, 5 shoulder rolls..forward and back, 5 Barbara Windsors... arms out breast out, 5 sky reaches. Check them out on your leaflet for the correct way to do them. Do not stress your muscles. After that I do a 5 minute walk and have been told to swing my arms to help the fluid drain as well. I have a compression sleeve which helps.....a lot, otherwise it is very achy. Mine was caused 2 years ago by enthusiastic gardening. I think it more than likely yours is due to lifting, as you mentioned. Life’s a bug**r isn’t it? Hope you get sorted. Best wishes. Ann x ... View more

Laura, how are you doing? Hope you have ditched Google and are doing some nice activities to keep you fit and well. Thinking of you. Ann x ... View more

Cleo, fabulous news. Thrilled for you. On with your life now, but great you had it checked out. Best wishes. Ann x ... View more

Laura, this is the hard part, just waiting for your appointments. What you need to remember is, until you are told definitely that you have cancer....then you haven’t! There are many benign results reported on this forum. Google is neither a doctor nor a medical journal. It is also out of date. You are wasting your time as well as terrifying yourself looking at that site. There are other sites, such as this one, where you can get help. You can phone the nurses here, and down load info on attending appointments. My advice, from experience, is not to look too far ahead. You are second guessing yourself, and stressing out, which isn’t good for your physical or mental health. Think of your little one, and let’s look at some ways of rationalising things. How about using a journal to capture your thoughts? You can write your innermost thoughts, then close the page and let go. A but of pampering would be nice at this time. U tube have some good stuff on self massage, self acupressure, tai chi, Pilates and yoga. A walk with your 4 year old, appreciating her and your present environment can be soothing.  Try something, anything, to divert your mind. Can I also say that cancer is now something we live with, not die from. There have been so many strides forward in research that new treatments are happening often. I’m a wobbly, overweight 74 year old granny with metatastic BC in my lungs. Diagnosed 4 years ago and just getting ready to go for a walk out with hubby. If, IF, you get a definite diagnosis of cancer, do not let it define who you are. You are you, and the will to live will get you through. Sending very very best wishes. Ann x ... View more

Well Tam, I think this is a niche problem you’re talking about, and a very nasty one at that. I’ve got lymphodaema in my arm and torso, and that’s enough without Covid ! Have you tried posting on the nurses section here? They’re excellent for advice and support. Do contact your BC nurse, and in the meantime get serious about your lymphodaema exercises to shift that fluid. Good luck. Ann x ... View more

Hi, I think there is a lot of conflicting ‘advice’ floating around. I was told 4 years when I was first diagnosed.....an AVERAGE of. I have been on Letrozole since October 2017 and am still jogging along. ER+, HR-, 3cm tumour, full node c Iearance, 25 rads. 4 mets in my lungs.  I have changed brands several times as side effects became problematic. My Onco has repeatedly told me that no one, NO-ONE, can guesstimate how long a person can stay on one treatment, despite averages,  and if my mets decide to go walk about, or side effects become unbearable then he’s got a lot more tricks in his little black bag! 🤩. I have a friend who is now NED who took Letrozole for 10 years with no side effects whatsoever .....I was very jealous! My take on it all is to keep plugging along, as best I can. Living each day as best I can, and leave the worrying up to my Onco. I receive 12 weekly scans with contrast , and am happy about this. If my Onco were to increase the length between the scans I think I may jump up and down for joy! That would mean my medical team had thoroughly reviewed and investigated my current status and were happy to allow me to go a bit longer. If you are unhappy then I think you need a frank discussion with your Onco as to why this has been suggested. Hopefully there are good positive reasons.It does seem to me to be a very big jump from 6 months to 12 months. Im on 3 monthly, so go figure? As you know, worry and stress adversely affects cancer, so best get it sorted so you are back on an even keel. You are entitled to a second opinion, and to change hospitals if you are dissatisfied with your treatment. Wishing you the best. Ann x ... View more

Hi, it’s 4 years since my lumpectomy and full node clearance and I’ve developed lymphodaema with accompanying enlargement and pain in torso. I have been provided with a compression sleeve and have been taught how to self massage to help drainage. I do this each morning in the shower, then each night as I get changed for bed. Around my torso is quite swollen, so I’m now in the position of my bras being very tight, so I’ve resorted to pull on bras which my lymphodaema nurse quite admired! The pain in my ribs eases with massaging, so when I feel it jabbing I raise my arm and have a few minutes massaging up and then down which seems to help. It was hell in the summer with bulging out of my sleeveless summer stuff. I think I’ll be treating myself to a new wardrobe this year. Ah well, every cloud and all that..... 😆 x ... View more

Ella, I’m so sorry to hear of Christina’s death. The fact that you were with her speaks volumes, and I’m sure she was reassured and felt safe with you by her side. I think you have demonstrated the depth of your love for Christine through your posts, and we should all be so lucky to have a partner like you. Covid has made life so much more difficult, but I’m hoping that you can reach out and find support for yourself at this very difficult time. Please be kind to yourself, and look after yourself. I’m sure you must be drained, both emotionally and physically. Big hugs. Ann x ... View more

Hi, Bikergirl, I hope you found help at Maggies. I find it the loveliest, most calming and supportive place. Well done for being so pro active and seeking support. Good luck with you treatments, and do keep us updated . As you know, there is always support here. Ann x ... View more

Hi Ms. Naive, I congratulate you on your approach to this disease and the accompanying treatments. Breast Cancer is very prevalent, but also very treatable. I echo your sentiments, and like you feel very lucky I live in these most pro active medical times. Not only have I accessed the very best medical attention, I have had psychological services to support my resilience, Tai Chi to build up physical strength , and such great peer support from this organisation. How lucky am I? I’m 74, overweight and four years from diagnosis. Just enrolled on a Marie Curie PA course!! Living with, not dying from, cancer . Good luck. X ... View more