Breast Cancer Now Forum

Hi Tapum I've been there as well...so guessing how shocked you likely feeling..... 2012 first time DCIS....recurrence on same breast 2018 them mastectomy....and new primary on opposite breasy in 2020 where I needed chemo, rads, biphosphonates and hormone therapy.... I no.lpnger trust my body....I guess its let me down too many times....but I'm out the other side now so have a different take on things....I actually consider myself lucky mostly...that my 3 cancers were primaries....its still early days for you...and lots of not knowing....I hope you get a plan soon and I wish you well  ... View more

Hi Lou72….I was told at my chemo pre assessment not to drive myself home after my first chemo because no one really knows how they are going to be affected first time….I actually could have driven myself as it happens….I always felt fine same day as chemo…it was a few days later I felt rough…..but people are affected differently ….maybe better to wait and see how you go first time if you are able to get a lift  there? …..hoping all goes well for you ... View more

Hi there silver birch….don’t feel you have to wear a wig….I got one because all chemo patients got a voucher for one at my hospital…..after getting it home, I never wore it…not once….it just didn’t look or feel like me…..i lost all my hair at day 16 post first chemo ….after that, I just wore turban style hats that I got from Etsy if I was out….and wore nothing at home…..in fact my 3 grandaughters now play dress up with my wig!….so definately do whatever you feel comfortable with….I had chemo in lock down so no cold capping allowed so didn’t really see any ladies with BC keeping their hair….there was a combination of wigs and hats and bald heads on my unit….choose what’s right for you….I wish you well ... View more

Hi Dolly I would definitely ask for your Allred score ( this relates to the ER state) mine was 7/8 so my oncstrongly advised taking letrozole.....I wish you well  ... View more

Hi there, I’m really sorry that some of you are having to look at chemo as an option ….. I get how upsetting it is especially after it not previously being on the cards. I completely understand that everyone’s circumstances are different and that any decision you make if entirely yours to make….I would just say make sure you are fully informed before making any decisions and be mindful that stats are merely that…..they are about a population….they are not about you.  First time I had a diagnosis ( DCIS low grade… 4mm no IDC)  I was told I had a 1 to 2 percent chance of a recurrence so radiotherapy would not be worthwhile…..unfortunately I was in that 1 to 2 % and had a recurrence after 6 years…..I later had a 3rd primary cancer in the other breast ( unrelated)….I guess what I’m saying is….think long and hard about your decision and if you can live well with it…..me, I’m a worrier…I like to think I’ve covered everything and that meant chemo was very worth it to me…..but I know we are all very different people…..I wish you all the very best outcomes ... View more

Hi Jean I'm sorry you haven't tolerated anastrozole well...I myself am on letrozole almost 3 years in...another 7 to go.....I asked myself the same questions ....and I guess the answer is we can never know our own individual risk....just a population risk relating to our tumour size/grade/type etc....according to predict...my benefit from letrozole is 6% ....but then it could be 99% or 1% to personally...I would just never know.... ive had primary BC 3 times.....First time round was dcis 4mm....so statistically my risk of recurrence was 1 to 2 % and yet I still got it twice more ( once a recurrence and another completelynew cancer) .....I'm not a risk taker by nature...I'm 58 so still relativelyyoung 😁....and my sides effects are tolerable ( although not great) .....so this is my rationale for continuing to take....but I completely get why some people choose to stop due to debilitatingside effects... ..... in my case it was the hormone receptor status that tipped me in favour of taking ....my last tumour was ER+ 7/8 .....whatever you decide I wish you well and would definitely speak to your team before making any decisions ....take good care  ... View more

Hi Amyc...that doesn't sound right to me at all....I'm.not surprised you are very worried .....maybe contact the PALS  team tomorrow at the hospital you were referred to ( Google the number or ring the hospital switchboard and ask to be put through) ... you could also contact the hospital trusts Health Watch champion for support....but I would try pals first....have a look at NICE guidance 'recognition and referral for suspected cancer: breast cancer.....there's a protocol in there for urgent referral .....hope you get some answers quick  ... View more

Hi Heartbreak...really sorry you here and going through this....my initial plan was surgery and rads as no lymph involvement showed on scans...but after surgery I had 1 node with cancer cells...so chemo was recommended....its like that shock all over again isnt it....like someone moved the goal posts .... so I get how hard it must be for you to process all this at the moment ....I wish you well heartbreak...take good care  ... View more

Hi wonkey... I hear you....its very overwhelming in the early days....I had paclitaxol for 12 weeks ( ended up 14 weeks as I had to have 2 weeks rest in middle)....then I had 2 weekly EC x 4 lots....and it wasn't nice....I won't lie... but it wasn't anywhere as bad as I thought it was going to be....I didn't have the option to cold cap as not available during.... covid...but in a way this made it easier...as one less decision to make .....I didn't ever feel sockness/nausea....not once...probably down to the cocktail of drugs you get given....I lost quite a bit of weight, as my appetite went....but it came back after chemo.....once I started chemo...it became a familiar routine....everyday Monday was bloods appointment and picc line clean....then every Tuesday was chemo....I actually missed it a bit when it finished...in a weird sort of way! ....I injected with filgrastim for 7 days for each of the EC but not with the Taxol....it seems a very long process at the beginning...and it is....I mean its 5 months of your life ....but, for me, it seemed to pass by quite quickly.....I found the constipation a bit hard to cope with...loads of laxatives prescribed...I got tired, but not massively so....the mouth ulcers were  painful but weren't there all the time and gelclair was my friend there....some things were a bit scary...I got a clot in my picc line which resulted in 6 months daily blood thinner injection...I also developed an ectopic heartbeat from the EC....but the team take such very good care of you....I never felt really scared....I am left with neuropathy in my hands and feet ....just unlucky I think...because not everyone gets this....but I have no regrets.... I would do it again if I was in same position ....I too had rads and am now on year 3 of 10 years of letrozole and still having 6 monthly zolendronic infusions ( maybe this is what your oncologist means too?)....definitely get to the dentist before you start chemo if you can ....as you can't have invasive dental  treatment whilst having infusion treatment....I wish you well for your treatment.....I hope all goes to plan for you...and that times passes quickly for you....take good care Wonkey  ... View more

Hi Clara Beth....I'm sorry you are in this situation..... the waiting and not knowing is awful .... in 2012 I attended breast clinic with a lump which turned out to be benign....but also had incidental findings of calcifications which turned out to be DCiS after biopsy...looking back I feel very lucky that I had that benign lump and the cancer was found because I was 47 so still 3 years away from routine breast screening.... although at the time I just felt the fear of the diagnosis....there are calcifications which are benign but professionals don't generally say its likely to be cancer if they are unsure...i like you was very shocked....that is completely  normal...the positives are its very likely to have been caught early and you will get the treatment you need...but I appreciate its very hard to stay positive when you just don't know...I hope the next couple of week pass quickly for you and you get your results quickly....wishing you well...take good care  ... View more

Hi jasper...I have had nodes removed both sides over the years.....I have my bloods done every 6 months and never have a problem ..... practice changes all the time.....hope you recover from your chest infection soon  ... View more

Hi again Teecass☺... so I kept all my brows and lashes until end of chemo ( but lost all my hair way way before)...then about a week after my last chemo it was like I woke up oncoming and they had all just disappeared..... didn't even recognise myself in the mirror.....then about 2 months my lashes were completely back and about 3 to 4 months for my brow In fact I think I have a better brow now than pre chemo .....I didn't use any product...but I know lots of people on here do....and have been happy with the results.....people used to say that to me too....very irritating 🙄.... but it usually comes from a good place ....they just wanting to make you feel better ...even if its really not what you want to hear....take good care ... View more

Hi Teecass.... my brows and lashes came back fairly quickly....but it took a while for them to thicken up....I asked my oncologist about microblading but was told not recommended for at least 12 months as my immune system was weakened after chemo making me more susceptible to infection .....but definitely ask your team because advice differs for different people depending on their treatment....I completely get what you mean about drawing in brows....its a real skill ( which I just didn't have 😳) .....and its not until you lose your brows that you realise how much they define your face.....I remember the lady from the look good course telling me to remember that ' your brows are sisters not twins,  so they don't have to look identical ' .... but I know with me, it really knocked my confidence...so I understand how you feel....for me, more so than not having hair....I hope you continue to get growth and both your brows and lashes start to thicken up soon...wishing you well  ... View more

Hi Sab  Do you have a 'managing attendance' policy at work that would maybe give you some answers?  My manager asked me to get my GP to put ' would benefit from a holiday to aid recovery ' on my fit note .... then I was able to take a holiday abroad whilst on sick leave.... otherswise technically I would have had to use AL then gone back on sick leave after the holiday ...this is fine if you need to use up your AL if you are going to lose it....but otherwise its good to have some AL to used after your phased return is ended, to ease you back in.....I hope you have a supportive manager ... enjoy that holiday 😊       ... View more

Hi Heartbreak Very glad you home now from surgery...the relief its over is massive isn't it.....there a pdf download on this site called 'exercises after breast cancer surgery'... That may be helpful for you ....take good care and hope you recover well  ... View more

That’s brilliant Andy.H …..what a relief for you and your family….thanks for sharing your good news ... View more

Congratulations Claire5 ! 👶 💗 ...lovely news .....maybe speak yo your health visitor and ask for a referral to your community infant feeding specialist team....they are really good in my area .... hope you get sorted  ... View more

Hi there Bookie My vitamin D levels dropped during chemo  .....down to around 40.... I was prescribed superstrength tablets to take for 2 months and now I take just one superstrenth one x one a month....this is alongside the daily vit D / calcium supplement i am prescribed ( adcal) ....it took around a year before my levels were over 75 ( the lower normal range ) ... maybe speak to your team?  My oncology team didn't seen overly concerned but were happy to prescribe....hope you get sorted soon...take good care ... View more