Breast Cancer Now Forum

Hello everyone.   I don't come on the BCC Forum very much anymore, but as I've just realised that tomorrow is the 5th anniversary of my first chemo, I thought I would dip in with a few words of reassurance and encouragement. I won't give any major practical advice, I see that ladies who have gone through chemo more recently have already done that.    I can still remember how apprehensive about it I was - the unknown is always scary. All I will say is that I had the 'Full Monty' of treatment - mx and node clearance with immediate LD Flap recon, FEC-T chemo and 25 sessions of rads, I managed to keep working at least part time through most of it, got in the odd weekend away and carried on riding horses whenever I could - and I'm single, live alone and my nearest family is 200 miles away (fab friends are much nearer  ),   Five years on and I'm well, happy and living life to the full. I wish I hadn't had to go through it, but it has given me one lovely thing - some very dear and lifelong friends that I wouldn't have met otherwise.    Good luck with your treatments, I hope they are kind to you - remember to be kind to yourselves.   Dx ... View more

Hi Molliana,  If you look in the chemotherapy section of the forum, there's a 'Top Tips' thread that might help.    The steroids they give you are corticosteroids, normally dexamethasone. They have two main functions, they reduce your risk of having an allergic reaction to the chemo and they also help the effectiveness of the chemo drugs. They do have some side effects (SEs) of their own - they can keep you awake and a bit wired (be prepared for 2am cleaning sessions) and can give you a bright red face a day or two afterwards.They also stimulate appetite.  HTH. Good luck! Dx ... View more

Hello everyone I very rarely drop by the BCC forums these days, but this time four years ago I was waiting with trepidation for my first chemo. I'd already had an mx, with full node clearance and immediate LD flap recon and, after my FEC-T chemo, went on to have 25 sessions of rads.    What can I say... Chemo is sh""te but 'doable' - I got off reasonably lightly with sde effects, but everyone is different. With the advice of your medical teams and the support you will find here, you will find your way through. What I can say is tha,t four years on from starting chemo, I am back (and have been for some time) living life to the full. Yes, I have some scars and lasting effects of treatment, but I work full time, ride horses and party hard in my 'spare' time. Since finishing active treatment I have been on fabulous holidays, walked up Snowdon (raising lots of money) and done all sorts of things that, in the depths of chemo, feeling a bit crap and with no energy, I could only dream of.   Hang on in there - it will pass.   I've done stuff I might not have done without my cancer diagnosis, but the one thing that I really cherish are the people I have 'met' (virtually and in reality) and life-long friends I have made because of it. I hope that you are all as lucky.   I see that there are a couple of you for whom this is the second time round. For those of you facing BC for the first time, please don't get too spooked - it does happen, but doesn't always. For those of you facing this again, I wish you luck and there were two people I know who were going through treatment the same time as me who were 'second timers' - one recurrance and one new primary. They are both well and happy and I had lunch with them a coupleof months ago.   Sorry for rambling, but I just wanted to drop by and offer a bit of encouragement. Good luck to all of you.  Dx ... View more

I didn't know Anne from this forum, but met her a couple of times at weekend retreats and chatted on line. I was looking forward to walking up Snowdon in her company, but her ill-health got in the way. We shared a love of cats (her's are much 'posher' than mine), live music and weekends away.   A kind and warm person, she will be much missed and my heart goes out Andy and all her family and friends.   Diane xxx ... View more

Hi   I had an mx, node clearance and immediate LD Flap with implant recon in Jan 2011. That was followed by chemo and rads.   My surgeon did an amazing job and I can wear 'normal' bras, swimming cossies and low cut tops without anyone knowing the difference. I haven't bothered with a nipple.   If you are having rads, implant only recons aren't usually recomended. My recon was affected by the radiotherapy - over a period of a year or so  it got capsular contraction. This was sorted very easily earlier this year, by removing the capsule of scar tissue and replacing the inplant. More surgery, but much less than going through a delayed recon.   I haven't regretted my decision. Good luck with yours. ... View more

Hi,    I'm best on Teva - very few if any SEs - but havem't been able to get any for months. On Wockhart I get more warm moments. Don't like RelonChem as they give me bad leg cramps at night.   If your main SE are flushes, then I know that many women successfully take a low dose of the antidepressant citilopram - doesn't affexct moods, but does damp down the flushes. There are alternatives if that doesn't suit.   Re aches and pains, I take a high dose cod liver oil capsule and glucosamine chrondritin that I'm sure helps. I've also taken up pilates which also helps keep me relatively supple,   Good luck. ... View more

Hi Faith   I had an immediate LD flap recon with implant in January 2011. I was driving again after 6 weeks, although changing gear was not as easy as I thought it would be, and i was back on a horse 10 weeks after the op and 4 days after my first chemo, albeit on a very safe cob in walk and a bit of trot!   I carried on riding gently all the way through my treatment - it helped keep me sane! It certainly did feel weird at first, and still does sometimes, but it hasn't really affected my strength. The first real test came that autumn when I got bolted with (unexpected pigs out on a hack). I successfully stopped withh no harm done!   I wouldn't recommend it if you are a competitive rider, but for general leisure riding I haven't found it a problem. Make sure you do all the exercises - and keep doing them. I have also taken up pilates which is a real help. If you are ridinbg correctly, it should all be about your core strength not your arm strength.   Good luck!     ... View more

Hi My rads team recommended antihistamines. My GP prescribed certrazine - the same thing as piriteze. They def helped! Pure aloe vera gel is alos very cooling - particularly if you keep it in the fridge! HTH Dx ... View more

Hi everyone. Hope you are continuing to recover OK Della. How did the onc appointment go Rach? I'm up for a meet almost any time - can't do the weekend of the 19th 20th April. Happy to host, or to take a big pot of something to Rach's place, or go for a meet in Shrewsbury. Hamley, hope your chemo is going OK. Sunshine and Denise - I've posted on the other thread - would be lovely to meet you all. Take care everyone Diane x ... View more

Just read the post above! Denise, you would be more than welcome too! And we are about the same age!! Dx ... View more

Hi Sunshine Sorry you have to join us on here, but I'm sure you'll find it a great source of info and support. I was just starting my journey two years ago. I had a big lobular lump, grade 3, which resulted in me having an mx, with immediate recon, node clearance, chemo and rads. None of it is nice, but it is all 'doable'. I'm back at work full time, have pretty much adjusted to the 'new normal' of my life post treatment and am getting on with stuff and enjoying life to the full. Hence, I don't visit the forums as much as I did. But ventured in tonight and saw your post and had to respond. I'm one of the Shropshire group that meet up once in a while. None of us are as young as you are, but we range in age from our early 40s upwards - and we are quite a 'young thinking' bunch. We are just starting to talk about another meet up and you would be more than welcome to join us. This is the Shropshire thread we use: http://www.breastcancercare.org.uk/community/forums/anyone-nearby-shropshire?page=36#comment-2085208 If you want to pm me with an email address or mobile number, that can be useful for keeping in touch too. Good luck and remember, there's no such thing as a silly question! Dx ... View more

Hi Jo BCC Think you've given Tweetypie a link to the wrong publication. She says she has ILC - you've posted a link to a benign breast condition publication! Tweetypie - think you'll find this more useful! http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/invasive-lobular-breast-cancer-bcc45 Good luck Dx ... View more

Hi all. Della, your germs are definitely shy and retiring - no ill effects here either. Re next meet up, don't think we should go any further north next time as it makes it difficult for Rach Harp and Heather. I'll be happy to host at some point though - house not massive, but can get 6-8 round the table! Dx ... View more

Hi To answer your questions "DJ007 does that mean you had a full mastectomy? At the moment I am looking at a lumpectomy ( think that's what it is called) but because of where it is I have to lose the nipple and areola. if you did have a full mastectomy why was this and are you pleased with you're reconstruction. Did they do your other boob to match?" Yes - I had to have a full mx (mastectomy) because my lump was large (5.5cm x 2.5 cm), in the centre of my breast quite close to the chest wall and it also turned out to be multi-focal - there were other bits of cancer in there as well. I had an immediate LD (latissmus dorsi) flap recon + implant. This is where they use some tissue from your back, wrapped around an implant, to create the breast shape. They removed my nipple, but I kept all the rest of the sking, and so the scarring on my recon boob is minimal. I didn't have absolutely massive boobs and they were reasonably perky and so the plastic surgeon (who took over after the breast surgeon had done the mx and node clearance) didn't have to do anything to my 'good boob'. He's done a really good job of matching and, while it will never look and feel exactly like a 'real' one. In clothes - even low cut tops, no one would know. Please don't be scared of chemo. It's unpleasant and it's boring, but it is 'doable' - I was one of the people you don't hear as much from - I was back at work 6 weeks after my op and I kept working alomost normally for two weeks out of three on chemo. I took more time off during rads, the travelling got to me and I got very tired, but I was back at work full time six weeks after they finished. All the technical terms are confusing - here are some links to some info you might find useful. http://www.breastcancercare.org.uk/community/forums/list-useful-words-terms http://www.breastcancercare.org.uk/community/forums/abbreviations-acronyms-used-forum http://www.breastcancercare.org.uk/breast-cancer-information/about-breast-cancer/primary-breast-cancer/types-primary-breast-cancer/invasive-lobular-breast-cancer Hope all this helps - once you start on your treatment plan you will start to feel better. Take care and good luck Dx ... View more

Hi Debcully Not sure if it's recent enough for you, but I was dx with ILC just over two years ago. Is there anything specific you want to know or are worried about? I had to have the 'full monty' of treatment - mx and node clearance (also had immediate recon), chemo, rads and now on tamoxifen, so may be able to help. Dx ... View more

Great news Lala I've just passed the two-year mark and NED is still my best friend too. Dx ... View more

LOL Della! Has anyone heard from Jean recently? shall I email her? Choices - dark chocolate mousse or lemon tart? Dx ... View more

Hi Hamley The recon before rads issue seems to depend on your particular care team - there are differing views on it. I know both the arguments for and against - and I still think I made the right decision for me. For all sorts of reasons, one of which being that there was no plastic surgeon in Shropshire at all at the time, I had my surgery in Suffolk. It is quite a complex issue - but an important one. You will be living with the consequences for a long time. Here's a link to a good book on recons. The version that comes up on screen is a preview - you have to click a button to read the full version on line, or you can download it - both are free. http://www.scribd.com/doc/54505458/Breast-Reconstruction I'll pm you my mobile number, so if you want to have a chat about my experience/take on it, you are more than welcome to call. Dx ... View more

Hello Hamley Welcome - but sorry you've had to join us. As Horace said, we are a friendly bunch. There's generally a gathering every couple of months or so and you'd be more than welcome at any of them. We come from across the county and are at various stages of our BC journeys. I was diagnosed just over two years ago and this Saturday will be the anniversary of my mx and immediate recon. I went on to have chemo (FEC-T), rads and am now on tamoxifen. I can still remember getting to the half way stage of chemo - I never knew if chemo day came round too soon or not soon enough! Do shout if you have any questions - one of us may have an answer/experience we can share. Good luck with your next one. Dx ... View more

Hi Rach Yes, you did pm me your address. I can do either date - but the 29th would suit me better too - zumba on a Weds and I'm driving across to Suffolk on the 31st. Any takers for dark chocolate mousse? Dx ... View more