Breast Cancer Now Forum

I am also a member of the Marvellous Marchies 2012 and this news has hit us all hard.  Dani was beautiful inside and out and had a real zest for life. We were blessed to have known Dani in our group, we will always remember her beautiful smile and joy of living.  RIP Dani xxxx ... View more

Hello ladies, I hope things have moved on for you and that you are now making progress with yoru recovery.  Horror story re the wheelchair!  Im in Herts and feel very lucky that I have had no such problems at my local hospital.   Duffer 56, I havent written anything down at all regarding my recon.  With my treatment, yes, I did keep a diary, but I didnt even think to do it this time.   I had a slight hic-cough last weekend.  Had a few aches and pain in my abdomen (just over 2 weeks post op), so I rang the hospital ward on Saturday who told me to take paracetamol and ibuprofen.  Rest, rest, rest and if no better to go back on Sunday.  Furtunately, things were better on Sunday but I gave myself a big fright!  Ive jsut done too much really.  Ive felt so well and had no pain, so its hard to sit and not do anything.   HFK1234, hope you have continued to make progress.  Are you off the AB's yet?  Hope the walking is easier for you now.    Best wishes to you for a speedy recovery Joan xxx ... View more

Ladies, hello. I have also just had a DIEP reconstruction last week, although mine was delayed having had an mx in 2012.  One thing struck me when I read your posts, why werent you given a wheelchair to get back to the car park, instead of having to walk a long way?  The care I received at my hospital was excellent, so im really sorry to read that not all ladies have the same good experience.  I wish you a speedy recovery and hope the anit biotics clear up the infection soon. Best wishes Joan x ... View more

Hi Fimbo Did you have a 'Sentinel node biopsy' done, where they inject you with blue dye?  As I understand it (and someone please correct me if I am wrong), if that is the procedure you have had done, they only take the first (sentinel) nodes in the chain.  The reason for this is that if there is no cancer found in them, there wouldnt be any in nodes further along the chain.  Lymph nodes are joined like a chain, so if the first one is healthy, it follows that those further along will be healthy too.  I only had 4 nodes taken when I had my initial surgery, which were all clear luckily.  They did take a further 4 when I had my mx, which were tested and clear too.   Also (as far as I know), there isnt a 'normal' number of nodes, it does vary from person to person.  its a shame you had your follow up with the onc instead of the surgeon, I'm sure they would have put your mind at rest!   Personally, I would be querying why you are having rads to your axilla.  If you have had the sentinel nodes taken and they were all clear, I wouldnt have thought you would need rads there too.  Of course, I could well be wrong and I'm sure they know what they are doing, but you probabaly need to get some clarification from your surgeon.   Good luck Joan ... View more

Angie, my plastic surgeon told me that they like to leave it a year after finishing rads before doing a recon.  I finished mine on 1 September 2012 and will have my recon early next year (they would have done it Nov/Dec this year but I have delayed because of family commitments).  Hopefully you will be able to have yours done next year too.  Good luck xx ... View more

Hi Chillipink, I'm so pleased for you tyhat everything has gone well with yoru DIEP.  I am having the same op next Spring and am goign throughthe usual worries and considerations etc, as you did too.  However, I have made the decision to go for it (the delay is my own choice for family reasons).  I have been following your story for some time now and just wanted to say well done and thank you for being so positive!  Can I ask, how have you got on with the knickers / bra?  Ive seen lots of posts about control knicers and front fastening bra's and have started making notes about the items I will need before surgery.  I would be interested to hear how you have got on with that issue.  Good luck to you, I do hope that your recovery continues to move forward and that you continue to be thrilled withthe results. Joan xxxx ... View more

Hi I cant open it either and I'm on a desktop. Joan ... View more

Just wanted to thank you ladies for all the info you post on here and(Sue) on your other thread. I'm not having my DIEP until early next year but I'm gaining so much info from your posts. Thank you so much and all the best. Joan ... View more

Hi Chillipink Just wanted to tell you what my story is. I had WLE Oct 2011, mx 2012. Chemo and rads 2012. Adament that I would not have a recon. Just wanted rid of the cancer. However, I have today just signed up for a DIEP recon. You move on and change opinion as your situation changes. I'm glad though that I didnt make any decisions sooner than I have done. Good luck what ever you choose! Joan xx ... View more

Hi Lurker, just popping by again, its nice to see a post on our thread. A few of us met up last week for the day in London, lovely day, picnic in St James Park. I hope you are getting on ok and adjusting to life post-treatment, like the rest of us. Best wishes to you Joan xx ... View more

Hi Melena When I had my mx (Jan 2012) I wore an old sports bra with my softie for quite a few weeks while the swelling etc went down. It wasnt really until after I had my prosthesis fitting that I shopped for an mx bra. Its still very early days after your op,, so you might be better sticking with the softie for now. I was a good couple of sizes bigger than normal (bra size not cup size) for a few weeks following the op. I must say that finding a bra that fitted and I was happy with, was one of the most frustrating things about the whole situation. If you are anywhere near a specialist shop (amoena, Nicola Jane etc) I would recommend you go t them for a fitting after your swelling has gone down. Next bes thing is John Lewis or M&S. If possible, make an appointment for a weekday as its quieter then so the assisitant will have more time for you. I went to John Lewis as they sell different makes rather then m&s which only sell their own brand. I have a Royce bra, which I am really happy with, same style in different colours! I have the same size as I had pre-mx and my under arm and chest area where I had the mx is still numb, so I guess that's how it will stay now. Good luck, dont rush things and I am sure you will be fine. Oh, and another thing I can really recommend is to keep doing your exercises! Best wishes Joan xx ... View more

I was taking Sea Kelp, Silica and Flaxseed oil. Must say though that I stopped taking them when i started treatment and havent got back into them again. My hair has come back ok though, funnily enough. I also dont think you should take Flaxseed oil if you are HR+. Yes, if anyone wants to try the Nanogen, pM me and I will post it to you. My hair is now grey / white so they are of no use to me! Joan x ... View more

Just popping in to say hello to any lurkers. Hoping everyone is doing ok and getting on with theri lives again, although I know that cancer is never far away from us, especially as we continue to go for hospital appointments and check-ups. I hope Fitter (Pam) is getting along ok, and has had some good news since your last post. We are having another meet up in London at the beginning of July, it will be great to see everyone again, and a couple of new faces. Hope we manage another get together later in the year when more of us might be able to make it. Joan xxxx ... View more

Jane, I have used Nanogen a few years ago as I had thinning hair from polycystic ovary disease. I agree it does work. However, I went to see a specialist hair consultant in London who recommended a cocktail of supplements / vitamins, which also worked, so I stopped using the Nanogen. I've got some of the powder (medium brown) and spray left, probably half a pot of each. I would be more than happy to post them to you if you could make use of them. PM me with your address if you can use them. Joan xxx ... View more

Hi Andrea Do you have a BCN that you could ring and let them know what is happening? If its of any concern they would take let your Onc know or equally put your mind at rest if its not. I feel its probably worth mentioning now though. Also, if you are anything like me, you would worry until next February and you could really do without that! Hope everything is ok for you Joan xx ... View more

Hi Della Glad to see you are doing ok and I hope the trial is good for you. Joan xxx ... View more

Hi Clare Its so lovely to hear from you and to hear that you are doing so well. If you go onto facebook and search for 'Marvellous Marchies 2012', and then you can send a request to join the group. Or if you want to pm me with your email address, we can invite you by email. Parsnip has given me this info, I dont have a clue myself!!!! Looking forward to hearing from you soon Joan xcxx ... View more