Breast Cancer Now Forum

Hi,  I have been reading your posts with interest.  I was diagnosed in 2018.  I never knew about dense breasts and assumed, like 1000s of others, that mammograms were the answer.  I now know different.  I was made aware of this by a lady I met on this forum who had many years of clear mammograms due to a high family risk and all were clear.  Only through her persistence that something felt wrong and an ultrasound scan was bilateral cancer discovered and she was told that she had extremely dense breasts.  She is working hard to raise awareness of this as many other countries alert patients to the density whereas it’s not mentioned here.  I’ve attached a link which has more information. https://densebreast-info.org/  We should all be given the information we need to decide if we require further investigation  to prevent more ladies ending up like us!   I’ve asked my hospital what my density is and was told they couldn’t tell but my oncology report said “dense” 😡  I’ll keep asking... next mammogram in April Kip x   ... View more

Hi EJBSinger, just wanted to pop in to say hi.  I also had ultrasound guided biopsy (twice) and although not mri guided it was fine.  I ended up having single mastectomy (no recon) but that was a personal choice.  Before any treatment or ops begin there always seems to be so many tests and choices to make so it can be overwhelming at times but make sure you ask questions, get all the info you need .  Once your treatment begins you’ll feel more in control.   kip ... View more

Hi all glad to hear you’re all doing ok.  As you tick off the chemo sessions you’ll find a rhythm to it all.  I started my chemo in July of 2018 so focused on Christmas too and it did come round amazingly fast (tho at times it felt a long way off).  It’S good to have something to look forward to ,  I even had hair by Christmas as it stated growing back towards end of chemo.  Steroidal sleepless nights..  ohh I’d forgotten about them...  yes nightmare for me too but just sleep when you can.. take care all Kip ... View more

Oh dear ladies, But you've both sensible and taken advice. I know how you felt about being lonely in hospital.  I ended up in for a couple of days with low neutrophiles and it was the day my son got his GCSE results so I missed out but I had to way that up with being safe and after 2 days I was back home and had no more issues. Keep strong ladies, just keep ticking off the days. Kip x ... View more

Hi All,   Firstly Znandra, you poor thing.  Sounds like you got all the SEs in one big woosh.  Unfortunately the first round is always a "do it and see" kind of thing as you never know how you'll react.  But at least they'll have it all sorted for next time.  Its amazing what they can give you and what they can tweak.  Hope those ulcers have gone. Yuck.  I had a sore mouth sometimes, particularly on my last type of chemo.  Salt water rinsed out regularly helped, as did Iglu mouth gel.  Also I was given some mouth wash from the chemo unit to use, trying to remember is name?    Worth asking the hospital.   Spots - I never got them but I do recall lots of ladies who did from time to time.  Don't worry about it feeling trivial to ask the chemo hotline.. they'd rather you asked and have come across all sorts.  Worth asking for some advice. Kip x ... View more

Hello Clare, Glad you are feeling ok after the first chemo.   Its always strange waiting for something to happen, and for many people nothing much does.  Did you have to have the injections into your tummy after chemo, if you did that can cause leg aches (and back sometimes),  just check you are ok to take pain killers for it.. but remember to take your temperature BEFORE you take any pain killers as they lower your temperature. best to be careful. Hope you're still feeling good. Kip x ... View more

Hi,  no I had no scans after treatment ended. I have a 6 monthly appt with oncology nurse which is more for a chat and chance to voice concerns.  I am also participating in Add Aspirin trial so I get some bloods done 6 monthly which gives me a little more reassurance.  As Mai said the use of unrequired scans can be bad too.  Some days I wish I had a scanner at home I could walk through every morning.  But as time goes on it does get easier.  Mai's 2 week rule is a great idea.  ... View more

Hi PinkWarrier76, Just had to reply to you.  I was diagnosed with the same as you back in 2018.  I had a mastectomy and they found small amounts in 3 lymph nodes. I underwent chemo, radio etc and have just had a clear 2nd year mammogram so I fully understand the fear you have, it still hits me from time to time and from reading other ladies experiences its very common to panic when anything hurts.  You are still very early on in the whole process and I can assure you that with time the fear and panic does subside and doesn't become the all encompassing thought.  I still panic and always will but we have to believe in the experts and trust that they are looking after us.   I'm sure others will be along shortly to give you more positive stories.  I always take comfort from others dropping in to let me know they are ok.  And as they always tell me... remember that there are many many many other women who were once on this site who are living normal healthy lives and no longer feel the need to be on this forum, quite often its only those in a panic or in need of advice who post.  The other good piece of advice I was given after treatment ended... "Thoughts are NOT facts, they are just thoughts"...   Big hug. Kip x ... View more

Hi there Exonian, Glad you found this page, although not glad you had to find it in the first place.   I'm two years post diagnosis now.  I had single mastectomy, node clearance, 3 positive nodes ,chemo, radiotherapy and now on Tamoxifen for 10 years.   Its quite some journey but one you'll find is manageable in small steps.   The operation, as the others have said, was quite straight forwarded, in and out on same day, all healed up really well.  I've reamined flat, but when you make a choice, make sure you have all the information, my BCN showed me photos of different options, its a very personal thing and whats right for you may not be right for someone else.   Focus just on the next step for now, otherwise it can be overwhelming.   Znandra - so glad the chemo went ok.  It is quite a relaxing unit at my hospital too, lovely staff.  I was in out and in 2-3 hours.  I had FEC x 3 and then T x 3.  I remember after my first one I sat at home just waiting for something to happen, nothing much did really... a few days later I felt a little bit nauseous but nothing too bad, no actual vomiting.  If you have steroids to take, bear in mind for a lot of us they made us very emotional when coming off them, expect a dip in emotions.. or a big shopping spree... steroids make you shop online (that was our excuse anyway!!).  And of course, the hair thing.   Mine started shedding about 12-14 days after first chemo.. had it shaved off once it was falling out everywhere.   Tough time but its just another step to getting through it. Once its gone its gone and the fear of waiting for it to go is all over. Hopefully you've found the chemo group for June and can go through it with them.. you'll make life long friends on there.. I still have a group and we regularly chat and even met up.   As you've found, sometimes only someone going through/gone through this can really get it. Take care ladies Hope the weather isn't too hot for you..  Kip x ... View more

Hope all going well today Znandra.   First one is the scariest but you'll be well looked after.  Take it easy, put your feet up and let us know you're ok. Good luck to you to Claire with your upcoming chemo.   I kept a tally of days like Shi.. .was great to see them ticked off day by day.  Big hugs coming your way ladies. Kip xx ... View more

Hi Claire,  oh you poor thing, don't worry it's completely normal. The worry gremlin will always raise its head from time to time, it happens to us all and you've just been given a lot of information to digest recently.  I was the same, once treatment began I felt I was doing something positive and that helped too.  Your team will have planned the best treatment for you and we have to put our trust in them.  Keep talking to us and we'll hold you hand along the way.. At a safe distance obviously 😘 ... View more

Hi everyone, I told you Shi would keep you smiling..Wham perm is definitely it. I can sympathise with the strange sensations post op, after my mastectomy i had all sorts of tingles, twangs, and phantom nipple too..still get that one occasionally but i was told as nerves settle etc it does hurt a bit.  It all eased over time though. I agree with Shi over the hair loss,. Its definitely a tough thing but having control helps.  I cut my long hair short before chemo, took the chance to try a pixie cut for once,  then shaved the lot as it started to go.  Initial shock was hard but after a few days you just move on..  i was given a voucher towards a wig and it looked good, even my oncology nurse didn't spot it, and gave me a little chat about expecting hair loss.. she was shocked when i whipped it off..also gives you a good feeling if you meet those people who are looking at you and wondering and you scratch you head and jiggle the wig slightly..their faces!  I have embraced the new grey hair and the curls which did straighten out somewhat eventually..now 2 years on i have hair just above shoulders again.  I used to wash my bald head and the new hair with a shampoo bar from Lush called New supposed to help new hair growth..never gone back to normal shampoo again. Sending hugs to you all especially those awaiting the  next step jn the journey Kip ... View more

Go girls.. you've got this!  Have to say Shi was a godsend when I was diagnosed.. always made me laugh no matter what the situation was.   She'll have you laughing, dancing and singing your way along. I was another who didn't get sickness, just a slight sort of morning sickness feeling a couple of times, but just kept taking the pills they gave me and got on through it. Good bit of advice from the others about keeping a diary and writing down questions.  You usually do see a pattern with chemo so know what days will be your best... oh and the sennokot... a definite must.. if you like prunes.. get them in! Take care Kip x ... View more

Hello, Sounds like you are all doing really well post op.  I had a mastectomy in 2018 (no recon) and can fully remember how it all felt straight afterwards.  Those exercises!  But they are really important to keep doing them, even when you feel "ok" again.  Your arm can stiffen if you don't.  I still do mine (not every day) but also do some yoga and walking etc.  I still have a numb outside arm and armpit and some across the scar but it becomes the new normal.  Just be careful if you shave your armpit as you can't feel a thing.   My scar has healed so well, its fading but runs across former breast under armpit and I remember it used to tingle and twang in breast and arm whilst healing, something to do with nerves, so don't panic.  My nurse told me to massage a gentle moisturiser into it as it helps flatten the scar and to wear a bra with the soft prosthetic in to help put some pressure on the scar in the early days.  If you are remaining flat for a while or forever (I think I am?) I love to wear a Knitted Knocker (Google search them) they are a lovely soft knitted prosthetic which are knitted by a lovely group and they'll send you them free.  I find them so comfortable and easier than the gel prosthetic from the hospital.  I have also got a knitted one and put a shower scrunchy in it for swimming, just wring it out and your done! Looking at the scar and boob/lack of... I made myself do this right away.. not everyones cup of tea and you do what is best for you.  I was quite amazed how neat it all was and now its just normal.. in fact the remaining boob is a bit annoying sometimes.  But thats just me...don't rush it.   I'd pretty much decided I wouldn't have recon from the outset but I may change my mind further down the line.. make those decisions when you feel ready.. remember its your body and nobody elses! For those facing chemo.. I had that and radiotherapy too.  The thought of chemo is definately  terrifying but it is doable.  You'll get loads of support on here, just find the appropriate "chemo month" group and you'll go through it together.  Obviously everyone is different when going through chemo but for most of us we seemed to have a few yuck days but pretty much managed to do everyday things inbetween. I even worked (from home) all the way through, got out for walks, went to friends (just not during the "infectious" weeks - you'll work that out when you get there).  So it wasn't all bad.  Just keep talking to your chemo team if you have worries, they have answers and medications for all sorts of side effects. I've just had my 2nd year mammogram since diagnosis, now waiting for results.. won't lie.. that wait is horrendous wherever you are in this journey.  But day by day.. cancer is not the first thing I think of in the morning or last thing at night. Be kind to yourselves. You've got this. Kip x ... View more

Hello Mockab, Just wanted to say hi.  I was in your shoes back in April 2018, had single mastectomy, node biopsy, then I had chemo and radiotherapy.. so a bit of everything there.  Taking each step at a time is the best way forward.  Trying to look beyond that can be overwhelming.  It is strange when you feel so well yet you know you have this "thing" going on isn't it.   I decided to remain flat on the one side, am quite used to it now, but I have an open door anytime in the future to have reconstruction if I wish. so never say never.    Take care of yourself and take things easy. Kip x ... View more

Oh the waiting is so hard isn't it.  Thinking of you.  Kip ... View more

Hey ladies, Just been reading your posts and was so pleased i wasnt the only one with husband issues.  Im 2 years post diagnosis now but during treatment hubby never showed his emotions, found it hard to hug me or discuss emotional stuff.  He was a brilliant support though and helped around the house etc.  At the time i would get so frustrated with him and its only now the dust has settled ive learnt how scared he was and he just couldn't show it to me as he had to be the strong one.  He has said that it is so hard going from husband to carer and then back to husband again..id never thought of that.  I wish he would have talked to someone about it all, and possibly he did just not me.   I had a single masectomy with no recon and its taken a while for him to look at that too.  Strangely i never had a problem with it. So husbands are a funny breed and as individual as this bloody cancer i guess.   Asda is my go to for post op bras too.  And mens shirts are perfect post op. Thanks for making me think about my husband, wouldnt swap him for the world but sometimes only another lady going through this can help.. so we are all here for you.   Kip X ... View more

Hi, Ive just sat and read through this post and was compelled to drop in.  I was diagnosed 2 years ago and you could all be writing my story.  I dont think unless you have ever received the news "you have cancer" you will ever fully understand just how that feels.  I was 48, 2 teenagers ,fit and healthy and found a lump.  Fast track a few weeks and wham..you have cancer.  Those first few weeks were beyond a doubt the worst in my life.  Waiting for tests, results and treatment plans seems a lifetime.  My emotions went from strong positive to curled in a ball sobbing and everything in-between.  I came to realise this was normal.  Letting out the tears and anger helped, sometimes just doing something else for a while.  There is no hard and fast rule for how you deal with this, everyone is different.  The one thing that we all have in common is this forum.  It is a lifeline!!  When I felt nobody could understand, someone always did on here.  So I'm glad you've found us. Im sure people have already said this but once you get started in a treatment plan you do begin to cope better.  I had a single masectomy, no recon and still haven't.  Not for everyone i know and you must make the choices with a selfish frame of mind.. what feels right for you!  I then had 6 x chemo, full node clearance, 15 x radiotherapy and now on 10 years of Tamoxifen.  Wont lie, wasnt all plain sailing..but you do it, i i worked throughout, albeit at home, and still got out and about and enjoyed life.   I can imagine having the coronavirus situation thrown into the mix must be hellish too.  So i just wanted to say, take it a day at a time, dont berate yourself if you have a downer day and keep on talking on here.. sending you all big hugs Kip ... View more

Hi Faithy, Im on Tamoxifen too, have been for approximately 18 months now.  I definitely find different brands affect me more, both physically and mentally.  I have very stiff sore joints, hips, knees, hands, feet etc.  I used to feel best on Teva brand but i believe from research and searching chemists that this brand is no longer available.  Its worth seeing if you can switch back to the original brand and see if that helps.  There are lots of ladies on here who have problems with brands too.  My nurse recommended taking supplements to help, she suggested magnesium and zjnc, glucosamine and chondroitin.  I do take these and am still stiff but who knows if i would be worse without.  Always check with your docs if you can take the supplements though as they could  react with any other drugs you take. I also do gentle yoga and that helps too. If you find a miracle cure.. let me know. ... View more

Hi Curlybear,  So glad the op is done and you're back home.  What a relief to get that but done, and don't fret about looking at the scar, do it in your own time.. No rush.  Those exercises are tricky to begin with but very important.  Just do them little and often.  I had very odd numbness and tingling around the wound and arm so don't worry if you do too... Nerves knitting back etc all feel odd. I still have some numbness but it has lessened.  Rest up as the anesthetic does take its toll too.  Keep safe KIP ... View more