Breast Cancer Now Forum

Leanne, you are feeling just like everyone else who has been diagnosed with cancer. The feeling of disbelief is paramount and makes it difficult.  I think the replies you’ve got are excellent, and I would certainly recommend a note book for questions and answers. I would also say take someone with you to appointments as it’s difficult to listen, write and take in what’s being said. I was advised to continue with my holiday plans after I was diagnosed at my local one-stop- BC centre and I’m jolly glad I did. The month made no difference to the size or progression of the disease and I was fit and rested for all the procedures . The waiting is nerve wracking, but your MDT have set meeting times to discuss your condition and plan your treatments so it probably does feel as though you’re in slow motion at the moment. Your successful treatment and outcome is their success, so be assured they will do everything possible for you. Thinning bones - there’s a treatment for that. Dry skin after rads- you’ll get creams given. Nausea with chemo- didn’t happen, there’s a pill for that too! There is loads of peer support here, and also information on the various treatments, but take it easy and don’t try and think too far ahead. I found getting to grips with one procedure at a time was best. The nurses are always available for questions, as is your own BC nurse. Always ask questions, as it’s your body and you know it better than anyone. I was 70 when I was diagnosed and after three years I’m doing really well. Slower than I used to be, but I’m getting older, so can’t blame everything on the dratted disease! I found my op, chemo and rads all very doable, and I’m here to tell the tale. My best piece of advice is to take any and every bit of help offered . Good luck. X ... View more

Hi Jilly, I was diagnosed Er+Hr- with a tumour in right breast a month after my 70th. Birthday. That was three years ago and I’ve finished my active treatments. Won’t say they weren’t tough, but doable. Like your OH, my lovely hubby was, and still is, devastated. However. , without him I would never have made it through so easily. He is my champion, nurse, chef and chauffeur. My big break through was us both finding the local Maggies Centre where we met other people like me. Tbh, all worse than me! I thought my diagnosis was the end of the world, especially when mets were discovered in both lungs not long after I started rads. At our age we’ve experienced life, and all it’s ups and downs , and this is just another ( big) bump in the road. To get to be as old as us means we’re tough, so, big deep breaths, Jilly, and take each day as it comes. Your successful treatment is your medical teams success too. You are very welcome to PM me fir further questions. Hugs and best wishes. Ann x ... View more

Joan, my GP won’t prescribe on financial grounds, but did agree to Teva brand which is more expensive. Dr. Reddy brand is manufactured in India and my independent pharmacy won’t stock it. Cipla brand , I’ve found, is literally crippling. I manage with Accord but more nauseous. Best wishes. Don’t give up. 💐 ... View more

Hi Joan, I don’t think I can generalise about alcohol and Letrozole. It appears that for you it isn’t a good combination, so I would just accept that and work around it. Unfortunately it does affect me in that my fingers go very stiff...so the side effects would appear to be different for different people. I do know after chemo I found I was unable to tolerate alcohol at all so stuck to flavoured tonic waters. Also my taste buds have changed dramatically, again it’s the chemo, so I quite like red wine now...much to my husbands dismay !!! I find I’m good with fizzy, a white wine spritzer is very acceptable, and a weak- ish g&t is ace! 😜 Red in small quantities, and white in small quantities is tolerable. Definitely don’t like alcohol as much as I did- shame! X ... View more

Hi Patsy, Teva is also my best brand but have had problems this month and so far my lovely pharmacist has only been able to source 2 weeks supply. However, she is a little 🌟 and is phoning around her pharmacist friends to source the rest. Obviously the EU situation is now beginning to bite. I’ve had Accord early on (3 years) and did ok. Bit nauseous but took my metaclopo-whatsit. Have clinic on Thursday so will let my Onco know about the Teva situation. Honestly, as if the damn disease isn’t enough to deal with! I’d advise you to stay away from the Cipla brand...which I renamed crippler after only 5 days! Dreadful🥴 ... View more

You vent away, that’s what this forum is all about! What can I tell you except nothing is normal , unfortunately. Everyone has very different reactions to the same cocktail of drugs. You are on one of the harsher treatments, so I would say what you are describing is not unexpected . Your Onco and BC nurse need to be kept informed of your reaction to the treatment, and it may be that you need a reduced dosage. I know I did. My Onco described it as using a ten tonne hammer to hit an egg for the first round of chemo. You get weighed and measured because the dosage is worked out on your surface area. So the bigger you are , and I’m a large lady, the bigger the dosage. It appears to be quite normal to have a reduction so your body tolerates it better. The fsg injections help get your bone marrow producing white blood cells, so your back ache may very well be that. Again, your team need to know. I was given tips by my district nurse. One was to walk after my injection for 30 mins, and the other to have warm baths in Epsom salts . Both seemed to help. i think you will get great support from the August monthly chemo thread where you will find others who are having similar experiences and you can help each other along. I know I valued my support thread immensely and we shared a lot of very useful tips. You are not alone in this battle, and everyone on here will help so you’ve come to the right place. Best wishes. 🍀 💐 X ... View more

Well, Maryjane, there are a lot of ladies out there who felt just like you do now. I’m sure you will get plenty of help to sort your situation . I’m retired, so didn’t have the issues you have. I would say quite firmly, that your health comes first, not your work. No one knows how your body will react to the regime you have described. I know ladies who have continued to work during chemo, and others who couldn’t . Everyone is unique and reactions are so different to the same treatments. I would suggest HR be involved so that you are well informed of your rights and entitlements before making any decisions. Legally you should be supported by your firm at this time. If not, Macmillan and Maggies Centres have dedicated staff who can help with benefit claims. You don’t say what chemo you are having, but some are much harsher than others. Your Onco and BC nurse will be aware of the usual side effects and could advise you. Fatigue, lack of appetite, nausea and insomnia are quite common, so be prepared. The nurses on here can give you some good tips and are available via posts and phone. Wishing you the very best on your journey. 🍀 💐 🤞 ... View more

Hi rjd, all a bit worrying finding a lump, but you’ve got a quick appointment and quick is good. If it’s a one stop shop type clinic, which most are, you can be given a firm diagnosis on the spot. My visit went like this - checked by triage nurse to make sure I really had a lump (!), then passed to mammogram area. After this I had to wait for the plates to be checked. (At this point I knew it was bad news as I saw a white starburst on one plate. ) Then back to the waiting area. Then passed on to a Consultant who confirmed that in her opinion it was bc and could she do biopsies. Agreed to this and three needle biopsies were performed . Not that pleasant I have to say, and I was pleased I had OH to drive me home. Then more waiting until I ended back with my triage nurse who introduced me to my BC Macmillan nurse and gave me a little appointment card with dates for my op, clinic with my surgeon, and details of chemo and rads. All within 2 hours. We did have a months holiday booked and I was told very firmly , and wisely as it happens, to take it. Best thing ever as it set me up for what was a very strenuous year.  please remember that until you have your diagnosis confirmed that there is a possibility your lump is benign. I’ve got 🤞 that it is. Good luck. X ... View more

My trigger finger was getting out of hand, sorry for the pun, and the whole stiff finger thing was a nightmare. After three years of Letrozole I was very disappointed to have increasingly painful joints affecting my quality of life. My GP has prescribed codeine and I’m wobbling along nicely again. Don’t know why I didn’t ask sooner! Course, there’s the constipation to sort now....hey ho! 🤔 ... View more

Hi Tina, I went to an independent pharmacy to get the brand I wanted - Teva. My GP dispensary just gave me the cheapest brand for that month and there were real differences. I went in and made a persuasive case for this particular brand and she has phoned around the country and got a little stash in for me! Bless her little 💓 She also delivers so I’m just thrilled with the service. I make sure I drop off choccys and other goodies a few times. Worth it for the outstanding service I get.  ... View more

Hi Sian, I’ve been on Palbo and Letrozole for three years now, and as the other posts say it’s a good combination. When Covid first appeared on the scene my Onco immediately took me off Palbo as my neutrophils drop quite severely during treatment and he thought it was too dangerous for me. I have resumed treatment now but am struggling with fatigue. As I don’t tolerate the drug well I am on 75mgms dosage , and my schedule is two weeks on, then two weeks off so my neutrophils recover . My Onco kept a very close eye on me when I first started treatment and played about with dosages and timings until we reached one that my body tolerated. He would never put me at risk, and I’m sure your mums team will be as protective. Wishing you both all the best. X ... View more

Hi Tamm, when I was first diagnosed I wanted a mastectomy just to be rid of my lump. My surgeon and BC nurse informed me that research shows there is no difference in life outcomes between a lumpectomy and a mastectomy. My tumour was localised so I was lucky . I have just read an article in the Telegraph Wednesday on radiotherapy being given during breast ops. One big blast to the site is apparently the new thinking. However, not all hospitals have the specialised equipment to do this. It then went on to say that five sessions of radiotherapy instead of 25 or 30 does the trick. So your hospital seems to be up to speed with current research. I think you’ve done really well to get this far on your journey which isn’t an easy one. It’s your right to have a second opinion, and also to be treated in a hospital of your choice. Good luck for the future. 🍀 ... View more

Hi Carole, whatever decision you make must be right for you. I was diagnosed three years ago and immediately asked for the breast to be removed. I could think of nothing worse than my body having this ugly intruder. My surgeon, bless him, spent a long time explaining options backed by research. In my case ( 1 largeish tumour near nipple, ER+ HR-) the survival rate with a lumpectomy Is no different to a mastectomy. Treatment is always patient led, but I found it hard to absorb everything thrown at me. I did find what i think is a cracking solution for difficult questions....I held my surgeons hand, looked him dead in the eye and asked...” if I was your mum would you send her this route?” Without hesitation he said yes. This allowed me to sign the paperwork with great confidence. Obviously you have more to consider if it’s a mastectomy such as reconstruction, but as I was 70 at the time I wasn’t going to do that as I felt I had little time left! Also, I only needed my boobs to feed my babies and I’d done that!!! I found the lumpectomy very easy. No probs with surgery, and good anaesthetics were a blessing. Good luck with your decision. 🍀 💐 ... View more

Hi Ally, I wonder if your anxiety stems from a deep seated worry that without these drugs the disease will return? I am on Letrozole and Palbo but I scored 21/23 for anxiety on a questionnaire I was given by psychological services. My Onco referred me to them when I had difficulty sleeping. I was, and am, extremely grateful for their help as I am now able to live, some days better than others, with the disease . I too attend a Maggies. Centre and have taken every course on offer to get my life back. They are a wonderful course of expertise and help. I think your post is very thoughtful and well considered, and after my own experiences I would suggest asking Maggies for a session with their in- house psychologist. Best wishes. X ... View more

Hi Maire, I had EC-T and managed 4 courses but my issue was raised temps with accompanying grogginess. I would suggest phoning your BC nurse or Onco and report the headaches. They are there to help. Best wishes. X ... View more

Hi Gina, my weight came off during treatment but, unfortunately is back on and some! However, I have a friend who suffered a similar weight loss and she received a lot of support to get her weight up. She had high levels of calcium in her blood. She was given a protein drink supplement which she managed . Other than that it was little and often. Soft foods mostly, not highly spiced. She found that she was better with pre prepared foods so she saved her energy for eating and not food prep. I think you should consider seeking some medical help as you seem to be out on a limb. It could be an over active thyroid, or other medical condition, but 3 stone is a lot. X ... View more