Breast Cancer Now Forum

Hi Sharon I have the exact same issue, been on Tamoxifen since Dec 2019, I have also tried evening primrose and starflower oil caps, neither helped. I use a chiilmax pillow and have an elec fan by the bed, also bought a 'him and hers' duvet, my side is 7.5 tog and hubby has 15 tog on his side (and a blanket too cos he says its like living in the north pole), also have the patio doors open some nights to cool me down. I used to sleep really well but now I wake every 2 hours, 12pm, 2am, 4am, 6am and then for some bizarre reason I go into a deep sleep til about 7.30am!  I have a review with the oncologist in a couple of weeks so going to ask if I can try something for the night sweats, I have been advised that Venlafaxine and gabapentine may help with the night sweats, but am having blood tests to establish my menopausal state, if post-meno they may switch me on to aromatase inhibitor instead so didn't want to mess about with other drugs if I am switching. Really interested in anyone else advice, tips and tricks Love Helly xx ... View more

Hello Lovely Ladies ~ how are you all doing? It's a whole year now since we started out on our chemo journey, where has the time gone? My life has settled into a new normal and although not fully recovered from all the treatment I feel in a good place, just a few aches and pains to remind me of where I have been and still some chemo brain but nothing too dramatic. Thinking of you all at this milestone moment and hoping you are all moving on with your lives. Helly xx ... View more

Hi Maz   My cancer was 15mm, grade 3 stage 1 so no nodes infected, hospital funded oncotype test as they said as I was 39 I was bordeeline, my score came back at 22 so I was offered chemo, then had rads and now on Tamoxifen for 10 years.   Talk to your breast care nurse, my nhs trust would not fund onco tests for people who were adamant that they did not want chemo, tests cost over £2000, so can save money in identifying those who chemo has no benefit, not to mention avoiding chemo if its not beneficial Thinking of you Helly xx ... View more

Hi Sarah   I found the whole journey doable but tough, I was lucky to have good support from my hubby and also from the NHS which helped as I really do not cope well with needles, the toughest parts for me were the biopsies and the docetaxel chemo, everything else was managable, with rads being the easiest part.   Dont mess about with any fancy washes and creams, you just need simple shower gel for washing and aveeno cream for moisturising your skin as neither have any nasty chemicals or metals in them ~ thats very important. I had 20 rads over 4 weeks and the worst part was travelling as the hospital is an hour away and doing it everyday is exhausting, but you develop a little friendship group with the other people attending at the same time, so you sort of support each other along the way.   Just be kind to yourself and try and take time every day to enjoy small things whenever you can, will really help with your mood   Thinking of you Helly xx ... View more

Hello Sarah   Im 40, been on tamoxifen since dec 2019, they started me the same week my radiotherapy started.   I can honestly say I was very worried about side effects but apart from some hot flushes at night I have none. The flushes are also affected by the chemo as it battered my ovaries so Im due to have my bloods checked in aug to see if Im pre or post menopausal.   I also have lots of friends who have tolerated tamoxifen fine and none of us have had any hair thinning or other issues so far    Thinking of you Helly xx ... View more

Thank you for your replies everyone, I dont feel so bad knowing I'm not the only one feeling this way ... View more

Hi Katy   My Onco seemed to think Tamoxifen is the best if it suits you and you have no bleeding so hopefully he is correct. He said he they did a blood test now it would give false readings, ie suggest meonpause but then periods could return, waiting a few more months will allow our bodies to heal a bit more.   I'm happy without having any more changes right now, just wish I could find something to get rid of the night sweats!   Helly xx ... View more

Hi Ladies   Had my oncology check up today so thought I would update you...   Basically he said that as I am tolerating the tamoxifen then to carry on with that for now and they will see me in 6 months for a blood test to check my hormones levels - if I have been put in to menopause by the chemo then we can talk about moving onto an Aromatase Inhibitor.   If there is any gynaecological pain or bleeding before then I have to go back sooner as there is a slightly greater risk of womb cancers on tamoxifen.   Not really any the wiser now but at least there is a bit of a plan.   Hope you are all doing ok?   Love Helly xx ... View more

Hi Landygirl   I had EC-T (they dont do the F part where I live) over 6 cycles and like you as I was totally confused about the whole thing when I started. I found chemo do-able but it does still have its challenges and I can't emphasise enough that you really do have to look after yourself and put yourself first, in front of work, family, friends the lot.    My first session was 10th July and my final one was 23rd October so it took 4 1/2 months (I had surgery first).   I really sailed through the first 3 chemo's - the EC's drugs - very minimal sickness due to the extensive 'goody bag' of drugs they give you, my hair started shedding exactly 17 days after the first chemo so shaved it to a no.2 to stop if from covering the house! I was still able to do most day to day things - but you have to remember that it totally blasts your immune system so even if you do feel up to working, you really need to be able to work away from people because if you get an infection you could end up very poorly and having furthr chemo's delayed - thus leading to chemo dragging on even longer.   I then moved on to the 'T' drug - taxotere or docetaxel, this was a different story, it caused joint discomfort, mega chemo brain and food tasted awful, and even though I finished on 23rd october I really wasnt physically well enough to return to work until January so chemo kept me off work for 6 months in total. (I'm self employed so was able to get a little bit of financial help from the DWP via the 'New Style ESA' even though I had savings).   Everyone reacts differently to chemo, and the emotional side of BC, you might be fine and you won't know until you get there - just take each cycle one at a time so you dont overwhelm yourself, this forum is a fantastic way to get support, advice, have a moan, no-one know exactly how you feel cos you are you, but we are all here to help each other as best we can.   I wish you well for your next part of the journey   Love Helly xx ... View more

Thanks Katy   I dont have a passport so I have to go to the post office so they can take my picture over the counter! But there are worse things I know!   Your oncologist advice intrugues me, I'm so glad you mentioned it as it gives me time to do a bit of research and discuss with my Onco on monday, I will feedback any other perspectives they provide!         ... View more

Hi Katy and Aww   Sorry your onco's are advising ovary supressing treatment, this whole process does feel like an assault on everything that makes us look and feel womanly. I had a few tears earlier ~ so silly but I have to renew my driving licence so now I will be stuck with a 10 year pic of my post chemo hair 🙈 not sure why this is bothering me so much but it is.   Im seeing my onco on mon, been on Tamoxifen for 2 months and side effects are no worse than the ones chemo caused ie no periods since July and hot flushes mostly at night. When I saw her last I asked what will happen about ovaries and she said we would wait and see (my tumour was ER+, PR+ and HER2-). Im going to be 40 in a couple of weeks and feel more like 60 at times.   Katy and Aww did they explain why you need the hormone supression as well as Tamoxifen? What are the extra benefits?    I hope you are feeling a little less sad today   Love Helly xx ... View more

Hello Louise, Silver Pixie and Bod and all our other July buddies   I too miss the support you all provided, it made a huge difference to my ability to cope.   Louise, I had a seroma after my lumpectomy in June but it wasn't bothering me so the nurses were happy to let it heal on its own, I couldn't face them sticking a needle in to drain it! It probably took about 3 months to go away completely. Other ladies had this when they had their radiotherapy so I dont think its a big deal -but ask when you have your planning meeting.    When you go for your meeting/rads just wear an easy to move top, they will probably give you a 'dignity tunic' to wear, my hospital sent me home with it for the duration - but there is very little dignity about it! It always made me laugh as they nurses try so hard to be respectful and preserve your dignity but you still have to lie on a hard bed with your boobs on full display while they line you up, and then they cover your 'good' boob back over while you get blasted! You get used to the process so quickly, compared to chemo it is a doddle. In case no one has mentioned you will get 3 teeny tiny tattoos (I call them my tittoo's) I was most worried about this as I dont like needles but when the nurse did them I didn't feel a thing and I can barely see them.   I was not going to bother with crop tops being bigger busted but after a few days the boob does get red and a little swollen so I bought some crop tops from M and S, they are sold in packs of 2 and I found that wearing 2 together gave good support so am still wearing them now (my rads finished Dec 4th).   Get yourself some Simple shower gel for washing and some Aveeno cream to lather on after rads and throughout the day. If you want to use aloe vera gel its really only best for cooling down, and you must let it fully dry - I did not know this and ended up having some nipple skin peeled off by my pyjama top!   Silverpixie, I do hope you get good results for your heart scan. I didnt drink before BC so it didn't cause mine, I would say if you enjoy a few glasses of wine here or there you go for it, life is too short!   Bod, good luck with your continued targetted therapy and zolendronic acid, you are a star.   My hair is returning, i have used my husbands haird clippers on the sides a couple of times just to even it out as they are growing faster than the top! I love having eyelashes again and my eyebrows seem to be coming back lighter. I ditched the scarves and never bothered with the wig, and everyone complements my hair, weirdly most people want to stroke it - which is strange but I go with it!!   Started Tamoxifen back in Dec, 2 months down, another 9 years and 10 months to go, so far so good, no new side effects to report - still having the hot flushes at night from the chemo tho which is the most annoying part.   Im just trying to lose the chemo 'padding' I gained from all the chocolate eating during treatment - have lost about 5lbs, need to lose quite a few more though to get back to my pre-treatment weight.   Stay strong ladies, you are all doing great and I think about you often   Love Helly xx         ... View more

Hello Nettie   Completely understand your fears and am in similar situation, ER + and PR + tumour, lumpectomy, chemo and rads at 39 😩 . Luckily my children are grown up and my family is complete.   I started Tamixofen on Dec 2nd, so 7 weeks ago and I can homestly say I have no new symptoms (chemo has caused joint pain and blasted my ovaries so have night sweats). I was incredibly concerned about potential sife effects but so far Im happy to be able to take a pill daily which will help protect me against breast cancer.   Talk to your onco team   Good luck   Helly xx ... View more

Dont be so hard on yourself x    It does sound like you have already made your decision, going round and round on things just heightens anxiety, your medical team know that you have to live through and beyond your treatment so they will guide you, but you have the final say.   I was like you, I know that if it comes back I cant do any more than what I have done so have no regrets by going thru with chemo x   My anxiety subsided about a week after my first chemo, at that point I knew I could do it and what to expect x ... View more

Hello L   Sorry you find yourself here, we are all here to help each other x   I had lumpectomy in june for a 15mm tumour, biopsy had indicated grade 2, when reports came back it was actually a grade 3 invasive so chemo was mentioned.   Im 39 and as tumour was 15mm and no lymph node involvement, they said i was in this small group of people eligible for oncotype dx test as it was unclear if chemo would benefit me.   I had test and results were back within a week, as we are under 50 years old we need a score below 15 to rule out chemo, mine was 22. Hubby and i had already agreed i would have chemo if results were borderline.   I had 6 rounds of chemo and in all honesty i got thru it fine, there were tough days but it was doable, i finished on oct 23rd and then had 20 blasts of radiotherapy so finished my active treatment 4 weeks ago.    Im glad i had the opportunity for the test, and didnt have to pay fot it as it is over £3,000. To me it proved chemo was a worthwhile treatment option.   If your not ruling out chemo, the test wont delay treatment but it will help form a more evidenced based decision.   Thinking of you Helly xx ... View more

Hi Sam,   Sorry you find yourself here but we are a friendly bunch I promise x.   Im self employed too, diagnosed in May 2019 with a 15mm grade 3, stage 1 invasive breast cancer. The thing I didnt realise back then is that there is so many possible treatment options which are all tailored specifically to you that it is hard to say 'how long' and each person responds differently to treatments too. Some people have sailed through surgery, chemo, radiotherapy and hormone therapy and been able to carry on working, whilst others have been unable to.   My advice is take each step at a time and don't worry about the next bit, make sure you stay in touch with your breast care nurse, and if you dont have one, ask for one as they are brilliant.   I have had 7 months off now, active treatment finished on 4th dec and Im just thinking about easing back into work now.   Be kind to yourself and hopefully someone who has a similar experience to you will be along soon.   Also I recomend you join in the January Surgery Thread for moral support too    Good luck    Helly xx ... View more

Hi Chelle56   sending you best wishes for your op, I had right sided lumpectomy (tumour was above my nipple) and sentinel node removal in June 2019, the surgeon had originally said 2-3 nodes to be removed but only took 1 in the end. It was a wired guided lumpectomy so the surgeon accessed the tumour by cutting around my nipple thus being able to neatly stitch me back together and its hardly noticable now.   I was advised non-wired post surgery bra's to be worn day and night for about 4 weeks, so my advice is to make sure you get a couple of well fitting bra's especially if you have a lot of bust! I bought a couple of M&S front fastening post surgery bra's and a high impact bra, but I found it difficult to stuff all my bust into the high impact bra as it zipped at the front and with slightly weakened strength in my arms was tricky. I found it helpful to wear my bra in the bath/shower as I needed the extra support, then before getting out the bath I would take my bra off, have a gentle wash, and then put a clean bra on after I got dried.    I have now just finished radiotherapy after chemo and am wearing M&S crop tops, I have to wear 2 as there is not enough support in them for me, and I would not have had enough support in these following the op, however, if you are less than a C cup then you will probably be fine.   Good luck Helly xx     ... View more

Hi mandles Well done for finishing! I finished on 4th dec and like you my skin looked like it was going to break, I was advised to use diprobase or e45 cream, the diprobase worked a treat and my skin is back to normal already. Take it easy, drink plenty and rest up Love Helly ... View more