Breast Cancer Now Forum

glad to find this thread - i'm just on 3rd epi session and having grim time of it -- such a relief to know that the CMF will be easier... ! just wanted to say thanks for sharing and leading the way as it were! all the best suex ... View more

Hi I was dx at 36 weeks pregnant. My tips are like the others posted here: take any help take it easy when you can ask for help from the hospital- i have heard of social services paying for child care if needed good luck and it can be done!! I cant believe how many of us are here with young babies, although the lovely H is a 2 year old now 🙂 Remember there are mums all over the world in extraordinary circumstances. Your children will not judge you, so try not to judge yourself. My partner has disabiliites so I knew it would be a bit different for us, just didnt realise how different. xxsam ... View more

Hi Rebecca Your post struck a cord with me and I feel I know exactly what you're going through as my head was spinning just the same when I got my results in January (surgery after chemo) -Grade 3 Stage 3 -12 out of 15 lymph nodes involved with extracapsular spread and vascular spread. The scariest time imaginable. I was convinced I was about to die. I've got two little boys -2 and half and 8 months old and they're fantastic and a brilliant husband and family and I don't want to leave anyone yet! Everyone's posts above are brilliant and so well said, it's so easy to look at stats and I really wanted someone to tell me 'my prognosis' but I discussed this with my psychologist and decided that no one can tell me 'my prognosis' as no one knows!!! No one can say what will happen to 'you'!!! All the stats are based on 5 to 10 years as that is how they measure it, no relation to lifespan at all. All the stats are also based on completely different treatment to the treatment we're all getting as it has changed so much. Herceptin is our best weapon in this fight and we're receiving different chemo to women 10 years ago. Tamoxofen is a brilliant drug too and very well established. So remember, you are you, your treatment is your treatment and your outcome will depend on loads and loads of things. Things that have helped me feel a lot more positive are these discussion forums and the fantastically inspriation women writing on it, my psychologist, prozac, reiki, massage, generally spoiling myself, spending too much on handbags and shoes, cuddles with my boys, going out and having good times, red wine and actually doing whatever I want to do and booking loads of holidays when all this hideous treatment is over!!! Start planning some good time for you -whatever you like, lunch with friends, shopping, massage ..... whatever. Reiki is really really good for me and hynotherapy too for deep relaxation and good visualation. Remember your body is now in shock and I found it helped loads to allieve the anxiety and panic attacks and scary feelings. Keep in touch -would love to know how you're doing. Hxxx ... View more

Hi Margaret I hope your oil has arrived, it got down to about -6 here in Manchester last night and was probably colder where you are. Lucky you being up in Scotland, we love it up there, have been going up for last 12 years and are hoping to get up some time in August. At least we still have the sunshine which really gives a boost. Feel a lot better today, you're right about the weepies - they come from nowhere and there's nothing you can do stop them. Hope you have a nice day. Wendy x ... View more

Hi all Quite agree with Sue - thank you Geraldine for such a positive post - I had just finished 4 x fec, about to starts rads, followed by 4 x tax and herceptin - and sometimes it all seems a little daunting. To hear from someone who is now 'out the other side' is quite uplifting. Wishing you well for the future and hope you continue to feel so well margaret xx ... View more

Thanks Julie I am glad that's the fec out of the way. Hopefully the rads will seem like a breeze lol - not too sure about the taxotere later though - I'm trying not to think about that one! I have a wee holiday planned for the end of my rads - it coincides with my youngests school hols so we are just away to the lakes for a few days. Then at the end of my taxotere - my eldest daughter is getting married - so have that to look forward to - then after a 3 month recovery (from the tax and the wedding lol) - I shall climb Ben Nevis. Hoping Herceptin doesn't have any side effects I haven't heard about cos I'll be on that then as well.............. but I'm sure I'll cope?!? love to all take care Margaret x ... View more

Hi Angela, Sorry I haven't. Just received the one about it disappeared. Sukes ... View more

Hi Here's an idea for you. I had 4 FEC and then 4 taxol but I had them weekly ie 24 single doses every week instead of every 3 weeks. The Fec side effects were just as bad as the bigger dose in one but I had NO side effects on taxol apart from aches and pains. Why not ask if you can have taxol weekly? My onc let me and he said it is just as effective weekly as 3 weekly but you have to fight for it as it costs more but I am sure you would have a good case! Love Alise x x ... View more

Hi Ruby, Anne and Dawn Thank you girls for your support, it means so much to me in these early days. Your are right Dawn its the waiting around that I am finding hard plus tired from little man waking at 2-4am...argghhhhhhhh sleep baby sleep. Anne- I had my daughter at East Surrey so know it pretty well. I am glad you had great care. Did you have to wait this 4 week wait? This is what is bothering me especially when I hear others having sugery done 2 weeks after dx. I sat and worked out from the start to the actual dx weeks last night and it is exactly 12 weeks from my first appointment at hospital, through my many tests and I waited 41/2 weeks to have that b****** lump removed, now another 4 weeks wait and another 2 weeks ontop of that for results takes me into mid feb. Yet I hear that PRH and Brighton ( who like to be seen as one unit for breast care) have a really good name for themselves for BC care. !!!!!!I always thought time was of the essence with regards to this.Do you get the wigs as part of the NHS?? My daughter wants to cme and choose mine if my hair falls out. She started crying last night saying she wants mummy's hair to stay. I tried to explain that it MIGHT but if it doesn't then how great to go and choose another hairstyle and that eventually my hair would grow back. Its the bits and bobs that she has heard me talk about to hubby or my mum bless her. Yes Anne with regards to friends we will wait and see. My MIL who is Australian rings me alot. She has come up trumps in showing her support and care towards me as she has been a pretty cold fish in all the years we have been married, you know that sort of typical MIL who you hear comedians chat about !!but she rings and chats and is telling me how much she is thinking about me.....wow hubby and I both nearly fell of the sofa with that but I am so pleased and thankful for her turnaround. I know she finds it hard as all hubbys family are out there and we are here and I think she would love to help. Well the day has started my family are awake so lets gets on.....Thanks again all of you I am feeling ok today. Take care girls chat soon Love n hugsssssssss to you P xxxxx ... View more

Hi Dawn I am in East Sussex we have been here just over 3 yrs. Disney blizzard beach was good when we were out there and Magic Kingdom and Animal Kingdom were brilliant especially for our 6yr old daughter.We got advised to eat at a place called "Golden Coral" they are all about over there and it was you pay one price and eat whatever and how much you like. I liked it as there was plenty of salads and veg stuff and more choice that eating at the restaurants on our hotel resort. I know its not everyones cup of tea but it worked out ok for us and of course our little man ate free there.Its pretty expensive to eat at the parks..or rather it can be depending on what you want. We used to go to Kmart( it's massive) and get some bits and keep them in our hotel room etc. You will all have such a magical time.Shut me up !!!! Awww bless little Sophie for being brave and poor Jack he did the pain bit for her then !! Its horrible taking them knowing they are probably going to feel it isn't it? Yes op is booked for 1st feb but I did say I am happy for a cancellation if it comes up. I spoke to another BC nurse yesterday and she was very helpful with explaining more about chemo and rads. I have a few qestions I will be asking the consultant on friday. I know its very scary hearing this grade and stage but I know I am a 3 which they just say is active if it was a 1 they say it would be in-situ and they said nowt about a grade 2. Apparently they aren't at any point yet to stage me but again they say they dont really use that anymore. My GP said alot of scary words they use is just there terminology and don't be alarmed by it. The reason of course I have to wait 4 weeks for op is the due to the guidelines. Every person has to be operated on ( if necessary) within 4 weeks of dx and of course there is a backlog as they are trying to get everyone seen within those 4 weeks plus of course Christmas would have put more people waiting due to consultants having holidays etc. Anyway will chat with them on friday. You care hun and like you I am here for you too ok standing side by side although I am a newbie I will be as positive as I can and that is going to be alot ok..!!! Chat later Love P xxx ... View more

Just my luck, after getting through the last couple of Taxotere with not too many mouth problems, I have now got toothache - it's nothing to do with the chemo, the tooth has been playing up for a long time and needs to come out. I have to wait until tomorrow to see the dentist, hopefully he can fit me in. Has anyone else had to have an extraction or or other dental treatment while either having chemo or shortly after? (I finished on the 21st Dec). I am due to go into hospital on the 15th Jan for my mastectomy and don't want to have to deal with toothache as well (although I know this may seem trivial after all we have gone through!) Happy new year to you all, Tracy xxx ... View more

Hi Debsy Good to hear that your scans prior to reconstruction were good news. You are so correct in what you say about high node involvement being a very frightening path. I also had 15 nodes with cancer. However, I was also four years misdiagnosed, being told I had nothing to worry about on three occasions. My GP also refused me a mammogram saying I was not eligible as I was under 50. I hadn't realised that high node involvement is more common in younger women. This concerns me greatly - are younger women are not getting the care they deserve? All the younger women I know have Grade 3 cancers which is considered aggressive. And, like you say, there are no programmes in place to get regular checks. I hope Breast Cancer Care are taking a note of what we are saying here. I personally think many younger women are getting a raw deal. Whilst 80% of breast cancer affects the over 50s, what happens to the remainder 20% who are under 50? Do many of them struggle to get their voice listened to? I know I did. Wishing you a very happy and healthy 2008. Love Jeannie ... View more

I had my 1st tax and it's not a good experience. Had all the side effects mentioned and more. Just came back from yet another hospital stay. This time I had 2 blood transfusion and more IV antibiotics. I also have the 7-day GCSF jab but it was making my body ache (in addition to the Tax) so much that while in the hospital, they stopped giving it at day 5. I'm back at home now but has sore feet that I find it hard to stand, let alone walk. I am finding this chemo very , very hard..... My oncologist is baffled at what to do next and will discuss my case with other onclogists and surgeons at their weekly meeting next week. An option is stop chmeo, do the ops and continue chemo after that or change the chemo from 3 weekly to weekly smaller session or reduce the tax. I'm confused.. I just want it to be over with. Has anyone had the chemo regime changed? ... View more

Hi Lolabelle Have just posted on your other thread as I am having treatment in Guildford. Hadn't realised though that the team in Guildford has the link with East Surrey anyway (Thanks Anne for that info) - definitely sounds as if you should start in East Surrey and stay local while you can. Let us know how you get on Kay xx ... View more

Hi Lolabelle I am having treatment in Guildford and have been really pleased with the team there. I actually go privately - the team is the same but can't really comment on the NHS hospital facilities. They do though have a wonderful centre called the Fountain Centre which provides complementary therapies (massage, yoga, counselling, shiatzu etc etc) as well as a quiet place to sit and wait - I am a regular visitor there. Mark Kissin is very knowledgeable and has done a fantastic surgical job on me (mastectomy and breast reconstruction - no-one can really tell my breast is reconstructed as he managed to preserve the nipple and give me a very good shape). Anthony Neal is the oncologist who again is very knowledgeable (always up-to-date on latest treatments etc). A great team and one, in my view, with a deservedly good reputation! HOWEVER having said all that, you are really at the very early stages and I would have thought go for the most convenient location for those first tests - ie East Surrey. I don't think you will be tied into that if you do require further treatment but you could always ring and ask to speak to the Breast Care nurse there and check - or speak to your gp again. It would also give you a chance to see what they can offer at the East Surrey and how you feel about the team there (should the tests show it is bc) because if you do require treatment, going local will certainly make it a lot easier for you with your 2 little ones. You always have the right to ask for a second opinion (at Guildford if you wanted) if you weren't entirely happy with what they were saying/suggesting. One thing to check out is whether the oncologist and the surgeon work closely together - I know the 2 in Guildford meet very regularly to discuss patients. Don't think that is so true of all other hospital "teams". There are lots of people on this forum (and support through BCC) who will be able to advise once you know what the plan is and what treatment you might need. Really hope that all this turns out to be a false alarm - but the waiting is horrible. Have you got an appointment date yet? Let us know how you get on and how we can help. Kay x ... View more