I hope you don't mind me commenting too! But I wanted to share with you that lots of the volunteers we work with on our Someone Like Me service are a long way past their diagnosis. We do actually have a volunteer that was diagnosed with triple negative breast cancer in 2003.
Another of our volunteers Annie, actually celebrated being discharged from her hospital on Wednesday, now 5 years past her diagnosis. You can read a bit about Annie here and actually email her directly should you wish- https://www.breastcancercare.org.uk/information-support/support-you/someone-talk/someone-me/our-volu...
Again, I hope you don't mind me mentioning this.
Hi Colista, Bel is a 14+ year survivor. She and the lady that is 10+ really helped me support our daughter when she was going through treatment. There are others out there too, but not many on this thread. You all have our prayers for positive outcomes and long healthy lives after treatment.
not sure about on here but ive spoken to one lady in America whose coming up to her 10th cancer free year and is TN. Also there's robin Roberts in USA (tv presenter) who had TN in 2007 and still cancer free. I think we don't see many ladies who are TN and long term survivors as these forums etc werent really about then esp for TN as its the one form of BC that they still need lots of research into and also those that are living are doing just that and not on these sites.
Thank you ladies. I had a slight line n my arm but after exercises it's gone. I'm also on high dose clexane as I had a blood clot so this may prevent it happening xxx
It a tightness that runs through the arm or any part of the arm which seems to restock movement. It's the lymph channels which have been cut from the nodes trying to find something to attach to. Therefore they often intertwine like ivy frowning opinion a hedge. Not everyone get them but if you do start to get tightness report it to the BC nurse as you can do other types of exercises. I had them twice but working on them I have now recovered. It's more often in people who have full mode clearance.
Great news. Be prepared for some pain as you will still have painkiller in system from operation. Fingers crossed for clear margins. You will need to ask for tissue results to see how many modes were involved. Wishing you a speedy recovery.
look out for cording and keep up the exercises.
Hello Warcol, Just remember to do exercises as per instruction and if taking pain relief keep eating prunes as you can get blocked up. Good luck and keep up thefight
Hope you get some help bekah it will be a great help to you 2016asnt been good in some ways for you but onwards and upwards .take care xxDEN
Bekah, Do take all the help offered as the journey can take it out of you. You need to look after you now and things will resume when your a bit better. Sounds like you had a time of it with the birth.
Good luck Marina. I do wish you clear margins. Let us know.
Thanks for everyone with messages. I will get hubby to come to next appointment with me. I have tried the natural gells and moisturisers for the lady part which work sometimes or cause more itching. It may be allergies as well as a skin problem. Or just part of the menopause which is what my GP thinks meaning low hormones and no HRT available. Rock and hard place. The lymphodeama in that part is not helping. Bloody mess I am. In my head I'm 19 but in reality 57 so I have to expect some body changes.
Off for breast MLD now. This costs £56.00 per session where I live. The cost of cancer, loosing job, heating on during cold months during chemo, travel, parking, sports bras for lymph enlarged breasts is not something the government or people think about. Cancer costs in so many ways including self worth.
not posted for a bit but have been reading all the posts! I'm due my op 17th and counting down the days bt I do have a quick question. On another forum there is a lady with TNBC and she had a good response to FEC-t chemo but when she had her lumpectomy and node clearance there was still microscopic cancer left so they are giving her 3 months of extra chemo called cibroplatin (think that's right) before moving to rads. I've not been told about this and will query with my oncologist but just wondering if anyone else has had this. Love to you all Colista xx
not posted for a bit but have been reading all the posts! I'm due my op 17th and counting down the days bt I do have a quick question. On another forum there is a lady with TNBC and she had a good response to FEC-t chemo but when she had her lumpectomy and node clearance there was still microscopic cancer left so they are giving her 3 months of extra chemo called cibroplatin (think that's right) before moving to rads. I've not been told about this and will query with my oncologist but just wondering if anyone else has had this. Love to you all Colista 💕💕
Hi pam I do remember you going through all problems with cysts and I really felt for you then and do now I understand about being fed up with apps no answers doesn't help I have been lucky really my Drs have been very good at referring if they haven't had answers for me . It might help if hubby with you he sees how it is affecting you day to day virtual hugs being sent xxDEN
not so good to hear that your GP is not helping you with this 'lady' problem. It might be an idea to request a referral to a gynocologist for further exploration.
I am not a medical person, but have done a little research - and you might wish to explore the information on these links to see whether your symptoms are similar
and hope you can get is sorted.
Thanks Den. Mi think I'm gonna go back to GQP in about two weeks and I may ask hubby to come with me as the ear problem is not getting better. Also this lady part issue is causing problems. I mention to the GP when I saw her that the odeama in that area was still not fully resolved as this happened due to the emergency surgery to the cyst there during chemo. You probably can't recall I has an infected cysts in groin and sepsis so hospital did op then after that the area blew up like a ballon. The hospital just wanted to get the sepsis under control so two weeks of antibotics, then DN coming to my home to pack wound as I needed second chemo. During this time everyone was sorting out the cancer, sepsis and no one really helped with the after affects of the op. Result now tissue still holding fluid, and now been so long expanded it will not go gown. GP just says you need to where a pad. This is just too much as with this it itchy like hell. So gonna take hubby in and ask to see a specialist to the to at least get the itching down. GP says menopause but will not give HRT. That said I don't want HRT just want to know what's going on but am so fed up with hospitals. Had enough.
I have diagnoised autoimmune decease (Hasthimottios) so is this another one?
Breast still holding fluid so trying to shift that.
no one knows the after affect of all the treatment.
sorry down today.
Thanks to everyone for best wishes
pam have you seen a dermatologist about vulva problem if not can you ask dr for referral . Must admit my vulva as been a lot drier since having chemo I went through menopause in my 40s so it can't be that . Hope you get something sorted itching is horrible. Love to all DEN
Good news Den. So glad for you. I've got more lady part problems which are driving me made. Just so itchy. GP says side effects of menopause but I had that yrs ago. This started before my cancer and stopped during g treatment but is Joe back. GP doesn't really want to know and says mo,to HRT. Also ear problem is back with buzzing. I just feel so hard done by as I can't get a break from the itchyness. Tries thrush treat,went to no avail. What else can cause such itching. This bearing in mind I had ladypart lymphodeama and now have this in breast and lady part.
What at to do ?
Hi bekah your story about what happened when you had your takes me back to when I started nursing it's over 40yrs now I looked after a young women who had same as you unfortunately she was in a coma and never came round her baby was ok like Tarzan says it's very rare thank medicine as moved on but I never heard of another so thought it never happened now you survived that and you will fight this as well take care love DEN
Dee, how lovely to hear from you, and so glad your daughter is doing well. I am glad I was able to help you, and please send your daughter all the best.
Pam, how right you are about (once the shock etc. is over) enjoying life to the full. It's rubbish getting this illness, but if anything good can come from it, it's an appreciation that life is precious and to be lived to the full. None of us (and I don't mean us affected by BC, but everyone out there) know how long we have got. Yet - when we're young at least - we believe we have all the time in the world. Well, I did...When newly diagnosed, I remember having a chat with a friend of a friend, who was asking me all about my treatment and being quite caring, even though I didn't really know him. Imagine my shock when, just a few months later, I found out he'd died very suddenly (he was only in his 30s). I would never have believed, the night we were chatting, that he would be gone before me. And I am still going strong 14+ years later, despite the BC & this wretched BRCA1 gene!
Love to all xx
So glad you are feeling more positive - and long may it continue - although we all have our bad days, too. So don't hesitate to share them too, if you feel like it.
You might like to join the August chemo starters thread - oodles of advice
and perhaps look at this Tips and Tricks thread, too
Great we all are talking about our journeys as it helps us all. I've had a great day at a family BBQ and am staying with my mum who is 80 this year. What I've learnt from my journey so far is once you have dealt with the shock, trauma of treatment you realise you need to live life to the full. I'm 57 so quite a bit older than some of you ladies. I look back at my life and realise I've been fortunate to have family and a hubby that cares. I do believe this is an awful decease, particularly for those with young children as the worry must be compounded. Bel has inspired me and is still helping others with her story. I'm sure there are others out there surviving that have had big tumour, node involvemens but they're probably living life.
I'm so happy for those new here that this site can help but saddened that you find yourselves here. We are here for each other and I can say the fear does decrease after treatment.
Im sending healing vibes to you all.
will now spend a few days with my mum which I though in 2014 I wouldn't have.
It's been quite awhile since I was on. It is wonderful to see that you are still here encouraging the newbies. I will be forever grateful for your positive attitude and support while our daughter was going through her 2 bouts with TNBC, chemo, radiation and double mastectomy. This forum gave me a place to voice my concerns and you personally stregthened my attitude so I could be the support system she needed while making her journey.
She is doing well. She still hasn't decided on constructive surgery yet. She decided she wanted to keep the focus on living her life for awhile. Then she will think about surgery again.
Thank you again.