Breast Cancer Care Forum

Hi ladies I didn’t want to just read and run Without saying hello good luck on your journey. I don’t come on here very often anymore but I remember the comfort I got from people who’d been through this and come out the other side.   hopefully my story will give you some comfort too xx   I was diagnosed with stage three triple negative breast cancer in July 2013   I had a mastectomy, axillary clearance, six rounds of chemo, reconstruction surgery and later reduction of other side to match.  I now have the boobs of a 20 year old!  Every cloud an all that 😊 (I did all this living on my own, I’m a single parent too)   I’m thrilled to report that last year my oncologist signed me off.   I won’t lie chemo was tough at times and we all have our dark thoughts (usually in the middle of the night) but I promise they lessen in time. You’ve just got to make the most of every day, enjoy life and don’t worry about the what if’s.   best of luck Nikki xx   ps if you’re doing chemo then I highly recommend you join your relevant month in the ‘going through chemo’ section of this forum. ... View more

Portacath all day long as once it's healed it's less of an infection risk and less of faff as you can just get in the shower ie nothing to cover up or get caught in clothing etc ok so you'll be left with a little scar afterward but mine is hidden behind my bra strap. they can put it in under a general or local anaesthetic- I had a local. ... View more

Hi Katz, Firstly sorry you’ve found yourself here. In my case I wasn’t given a choice, I was told I needed a mastectomy. In a way I’m glad I wasn’t given a choice must be a horrible position for you to be in x Knowing what I know now (Having gone through chemo) if I had your genetic risk, without hesitation I’d opt for the mastectomy every time. I had a skin sparing mx with an implant, in a bikini you wouldn’t know I’d had surgery let alone a mastectomy. If the cancer had progressed they might not have been able to save the skin so I’d have to have a full reconstruction with the additional scaring. Basically what I’m saying is you’d probably get a better looking result doing it now when you have a choice. Also when my path results came back they found 10cm dcis which they didn’t know was there beforehand! The surgeon said we call it ‘the silent killer, so having the mx was the right thing to do’. An mx is major surgery, so you do have that to think about but I guess they wouldn’t offer it if they didn’t think you could cope with it or benefit from it. Best of luck with whatever you choose xx ... View more

With regard to diet there’s a lot of differing opinions about what a cancer patient should and shouldn’t eat. I just followed the advice of my oncologist which was if you fancy it, eat it. The only thing he did say is try to avoid foods that they tell pregnant women to avoid..... like soft cheese, runny eggs, rare meat, unpasteurised yoghurts etc etc it’s because your immune system will be compromised. He also said probably best to avoid alcohol the odd glass is ok but to be honest I didn’t fancy it anyway. Side effects differ depending on the drug regime you’re on & 2 people on the same drug don’t necessarily have the same side effects. Some people sail through & some are proper poorly, I was somewhere in the middle. My oncologist told me to look up my chemo regime on Macmillan’s website when he couldn’t find a leaflet to give me. I had Fec-t which seems to be the most common concoction. I had 6 rounds in total, 3 rounds of Fec & 3 rounds of T. Some people have 4 rounds of each. I was given 1 round every 3 weeks. You get given a carrier bag of drugs to combat the side effects to take home with you. Fec made me feel nauseous within a few hours & lasted up to 10 days, I wasn’t ever sick. T pleased to report no nausea, no symptoms (other than losing my sense of taste) for 5 days, then you get bone ache, I felt like I’d been in a car crash. It’s a good idea to keep a record of side effects to discus with your oncologist before next infusion, that way then can amend the contents of your goody bag. Remember you don’t have to suffer, they have all sorts of different drugs in their arsenal for you to try. The reason I think I put on so much weight is a combination of the steroids, the boredom, sofa surfing and just trying to find something you can taste especially when on the T drug. My oncologist wasn’t worried about the weight gain, he said you can lose it when treatment has finished, they don’t like you to lose weight as they need you to be as healthy as you can be whilst on chemo. The best thing I did was join the my monthly chemo group on here - you’ll find it in Going through Treatment > monthly chemo groups then join the month that you start chemo. It was invaluable as you can share any worrying side effect & quite quickly a few of the others will say oh yeah I had that too... instant relief! In my group there were just under 40 of us and quite a few of us are still in regular contact. x ... View more

Actually there is one thing I’d do differently and that is to curb my eating whilst having chemo! Don’t believe what you see in the films, like I did.... I thought ‘well at least I’ll lose some weight’ Nope, not true..... I put on almost 3 stone whilst on treatment & it took an age to get rid of it ... View more

I agree with Trixielady, In that I am so pleased I didn’t go for the back or the tummy option. All ops leave a reminder that the surgeon was there once - I still get the odd tingle, or sharp stabbing pain under my arm or an ache in a boob that actually isn’t there anymore! I dismissed the back option straight away as I didn’t want a scar on my back. I did seriously think about the tummy one as hey who would turn down a free boob job & tummy tuck! However when I was told, in great detail, how they do it, I wimped out ! I know I was lucky that as my cancer was deep in the breast meant they could keep my skin but it wasnt deep enough to affect the muscle so I was able to keep that too. In a bikini you wouldn’t know I’d had an operation let alone a mastectomy. I had a nipple made and then had the the colour tattooed, If you don’t look too closely you probably wouldn’t realise. Basically if I had to do it all again I wouldn’t do anything differently, ... View more

Hi Elfmum, I am a single parent with no help at home, ok she was a teenager so I didn’t have to do that much for her but I cooked for us both & looked after myself. I did my food shopping online for a couple of weeks whilst I was unable to drive. my dressing was removed by the surgeon at a follow up appointment about 2 weeks after surgery. He doesn’t believe in changing dresssings unless they’re soiled, better infection control apparently! Things I found difficult at first:- - raising my arm above my head, although I think that was more from the axillary clearance rather than the mastectomy - carrying the drain around with me for a few days - sleeping propped up on pillows, my usual sleeping position is on my stomach so that wasn’t gonna happen for a while. I bought a bra from macom medical, was expensive but I got good use out of it with the 3 different surgeries I had. Just the thought of wearing an under wired bra made my bum twitch for a couple of years lol I did have some cording along the length of my arm which was a vile sensation. Pleased to report it all went away eventually. I am left with some pretty impressive scars under both boobs which have now faded to a thin white line & a wide scar about an inch long in my armpit. My armpit & a little way down the inside of my arm is completely numb. And chemo is a nasty memory. But after all is said & done I believe it to be a small price to pay for my life! It all seems such a huge mountain to climb when you’re first told but it does get better xx ... View more

I was diagnosed at 49 I had a right side skin sparing mastectomy, they inserted a temporary implant to preserve the pocket. I was horrified with how it looked when I woke up. I then did 6 rounds of chemo. When I’d recovered from that I had the temporary implant replaced with a permanent one. 6 months later I had the left boob reduced to match. I’m extremely happy to report I now have boobs that are more pert than my 20 yr old daughters..... every cloud and all that. Initially I asked for a left mastectomy but was told they don’t like removing healthy tissue! That was 5 years ago, everything has softened up, so boobs look & feels very natural. I take my health much more seriously now and am fitter than I was 20 yrs ago. Best of luck xx ... View more

Hi Mama Tony, No I'm not on any special diet, well I am on a low potassium diet but that's because my kidneys are knackered, nothing to do with the cancer as had it years before. Think chemo may have sped up the deterioration of my kidneys though ☹️ . Some people say dairy is bad? I don't drink milk now, I drink oat milk but more because it's low potassium. Life is for living and I figure it would be pretty miserable existence going without chocolate & wine 😬 I put on 2 and a half stone during treatment, my main aim was to lose it and eat a healthy diet.  I lost all the weight plus a little more, joined a gym and reckon I'm fitter now than I was 20 yrs ago. Because of the trip neg diagnosis I did opt for brca testing - which thank goodness was negative. I can only go by my experience - I had 6 monthly check ups (cop a feel) alternating with consultant and oncologist but only 1 mammogram a year - that was for 5 years. This year I had the choice to be discharged or see the consultant once a year - I wanted the reassurance. I'm not sure how long the annual mammo's go on for.... Take care Nikki x ... View more

Good morning ladies,   I'm from the September 2013 thread, I'm not on here much these days but I do like to pop in particularly on the September group to see how you are all doing.   When you get that rotten mouth - Some of the girls in my group drank tonic water prior to eating they swore it made food taste near to normal, unfortunately for me I don't like it.   I had awful pain on the  'T' part of FEC-T, I complained to my Onc to try to score some stronger painkillers for next time - I didn't want a reduction in chemo strength because hey that's why we're doing this...... to blast this disease to kingdom come.  Anyway he prescribed what he called the steroid tail, yes it is more steroids but you take them in ever decreasing doses daily rather than just the sudden stop.  It was like a miracle cure.   PS Top tip! I was told to take my steroids at 8am & noon, they never interfered with my sleep 😊   As for me now, I had skin sparing mx, then reconstruction surgery once chemo finished, then had a reduction on good boob to match, had a nipple made and then tattoo'd - haha I now got the boobs of a 20 yr old, every cloud and all that 😃   As I was triple negative I'm not on any meds which was a bit scary as I felt left adrift without a life belt, my Onc signed me off this year and my consultant will now only see me annually as opposed to 6 monthly for another 5 yrs (he did say he could discharge me but I like his reassurance).   So life does go on, you just appreciate it a bit more.   Best of luck ladies x   PS my hair grew back curly, was dead straight before lol, it's not so curly now more of a kink.  I used to have quite thick hair but alas it's quite thin now ☹️ , on a plus note, leg & armpit hair is really sparse 😆     ... View more

If you’re still feeling nauseous do not suffer in silence there really is no need. Your team have plenty of options in their arsenal, your cocktail of choice will be different to others. Eg I was allergic to metoclopromide, ondansetron did nothing for me where as others swore by them. My best anti nausea meds were Emend, Granisetron, cyclizine. Best of luck x ... View more

I found out from the girls on this forum so just incase you haven't been advised by your team..... you are entitled to free prescriptions for at least 5 years.  I got a form from my gp. ... View more

Hi sunbean, with regard to drinking lots of water. As someone has already said it makes it easier for the nurses to find a vein & less painful if your veins are nice and plump. I had a portacath so that didn’t matter for me. I suffered awful nausea (was never actually sick) on FEC even though I was on the wonder drug Emend as well as granesetron and metoclopromide*, one of the ladies in my group had the same chemo but sailed through with barely any nausea, she swore it was due to all the water she drank. On the 2nd cycle I made sure I drank at least 2lts the day before the day of and the day after and pleased to say it made a huge difference, many of the other girls did the same with the same result. *was switched for cyclizine as it turned out I was allergic to metoclopromide. ... View more

I didn’t cold cap & decided enough was enough day 19 of first chemo (day 1 is chemo day). It gets sore a bit like pony tail head. I clippered it to a grade 3 & although it was v emotional it felt so much better. I couldn’t bring myself to actually shave it off and allowed to do its own thing, it was all gone a few weeks later. I didn’t like the scarves on me as I felt that I looked like a cancer patient. The good thing about this time of year is that you can mess around with hats, I tended to wear beanies when at home and wiggy when I went out. It soon grew back once treatment finished xx ... View more

Good evening ladies. I was in your shoes September 2013 This monthly chemo forum was an absolute godsend & I am still in contact with a number of ladies that I met back then. I was triple neg, had a mastectomy, axillary clearance, 6 rounds of Fec-t and later reconstruction. As this is my 5 yr anniversary I felt drawn to come back here and will continue to pop in now & again to see how you’re getting on. If you have any questions, pls ask I’ll do my best to answer x Ooh top tip drink lots of water especially the day before, the day of and the day after chemo. Best of Luck xx ... View more

Hi MoDo, I had an axillary clearance 5 years ago this month. Unfortunately my armpit is still numb but I've got used to it now. For the first year you do need to go careful with the arm in respect to lifting heavy weight however on the same score you shouldn't not use the arm to carry stuff. My physio & consultant both said to gradually increase the weights carried. The worst thing was to not really use the arm then one day suddenly pick up something really heavy. I now do a 🏋️‍ ♀️ Les Mills body pump class 2 or 3 times a week & haven't got lymphedema 😊 Yes you do need to be careful when gardening not to scratch your arm and yes it's best not to have blood tests or blood pressure taken on that arm if it can be avoided. Best of luck x ... View more